Lately she is totally in to her communication device. She uses a Dynavox V max to talk. She has about 40 choices per page with many sub-pages. I can't even count the number of choices she has. And she's good at it! Like, really good. She wants it as soon as she gets up and keeps it going all day. This is a big improvement for her because the device is time consuming and can be frustrating, so it can take some encouragement to keep her going with it. It's also exhausting for her to hit her head against a switch all day.
Last week, she had to write about a story she read for Black History month. It takes 72 hits to choose the letters to write "Today is Thursday", just to give you an idea of what she did this week. She put together 4 complete sentences on her own during class. That would have taken more than a hundred hits (using word prediction). A 'hit' is when she turns her face to a button mounted to her headrest when the appropriate symbol is highlighted on the computer. She sees the correct letter and her cheek presses the switch to make a selection. She had to work quickly and efficiently to get so much done.
These pictures were science homework, we've since changed the program adding many "parts of speech" pages to make writing faster. I'll try to get some video, because it's something to see!
I am so proud of her, and she is so proud of herself. Moments like this make me thankful that I've pushed so hard for education. You never know what they're capable of until you offer them EVERY possible opportunity. Anyway, I'm getting off track :)
This very cool computer of hers made me think of the days when she got her first one. She was 3 or 4 and it only had a few choices on each page. It was only about learning how to use it. We gradually went up to 12 choices and then when she was in kindergarten they opened a program called "Gateway" for her. It had many choices and pages to explore. She loved it. She sat for hours listening to choices and exploring communication.
One day she came across a button that said "I have cerebral palsy". She hit it. My heart stopped. I'd never heard those words before. Oh, God! I wish you didn't, Emily, I thought silently. She hit the button again. And again. Over and over again the computer voice monotonically stated the truth. "I have Cerebral Palsy" It physically hurt to hear her obsessed with saying it. "Yes Emily, you do. Can you find something else to say?"
"I have Cerebral Palsy"
"I know Sweetie, I know you do".
After a few hours of this, Jeff came to me almost in tears to tell me to remove the button. He couldn't take hearing her say it anymore than I could. I knew the button had to stay, but it was heartbreaking for us.
Finally I asked her if she knew what cerebral palsy was. "Uh-uh" she said.
"Do you want to talk about it?" A big smile and a big "Ya!" filled the room.
I explained to her that she was born very early. I told her that babies were supposed to stay in their mommy's tummy for nine whole months. She came out 3 months too soon. I let her know that the brain needs a lot of air to be healthy and hers didn't get what it needed. The parts of her brain that told her legs to move and her mouth to speak were hurt and that's what caused her Cerebral Palsy.
She was content with that answer and didn't hit the button again.
That was when I first discovered the power of communication. She always knew she had CP, but it had never occurred to me to explain it to her. When she had the opportunity she asked. "I have Cerebral Palsy" wasn't the heart breaking statement I thought it was. It was a question from a little girl who waited more than 5 years before she could ask it.
She moved on to laughing as she hit the button "underpants" over and over in front of Hannah's friends...much to Hannah's mortification!
That monotone computer voice that can be so difficult to listen to has been an amazing blessing to my children. It is litterally their voice. Seeing them use it makes "I have Cerebral Palsy" not quite so bad :)
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