Yesterday, I found Petra circling the dining room by herself, looking around. She was waving her right hand in the air and saying, “Um, Um.”
“You want your water?” I asked.
“Yes, please,” she said.
Petra is perfectly capable of saying the word “water,” but she knows that in this house, “Um-um” and a hand wave also means water. Because that’s how Fiona communicates it.
I smiled to myself and found Petra’s cup.
This afternoon, while I was finishing my lunch and the kids were mulling around the table, Petra started poking at Fiona’s talker. It was propped on a chair. Fiona walked over to it. Together, they stood in front of the talker and pecked at words. My. There. It. Family. But Fiona’s hand got in Petra’s way, so Petra batted it away from the talker.
“No, Petra,” I said. “That’s Fiona’s talker. You have to let her use it.”
And she did. She stayed to her side of the talker. She started watching her sister. Fiona pressed Dad.
Petra shouted, “Dad!”
Fiona pressed Mom.
Petra shouted, “Mom!”
And so the game began. Fiona pressed a person’s name, then looked with anticipation to her sister. Her sister shouted the name back enthusiastically and smiled. They moved onto other words. Picture schedule! Butterfly! Happy Birthday!
I wish I could find the quote for you. I think it’s from Including Samuel, an award-winning documentary about the inclusion of kids with disabilities in typical classrooms. The quote goes something like this: The first fully inclusive institution for a person with disabilities is the family.
A few weeks ago, I stood before three rows of twenty or so students. I was at a university in Boston. The students had read my essay, “The R-Word.” I was answering questions about my work and the writing life. A student to my right raised her hand. “Do you ever worry what Petra will ask about Fiona’s disabilities?”
“Worry?” I repeated. “No. I think about it, but I don’t worry.” I was then able to tell this student with all honesty something I never thought I’d say four years ago. Four years ago, when Fiona was just a baby, her diagnosis felt like a tragedy. But standing in a classroom in Boston, in my brown knee-high boots and professional-looking dress, I could honestly tell this student that Fiona’s differences enrich our whole family. That disability is an aspect of human diversity, and human diversity is a gift for everyone. I don’t know all the ways in which Petra’s life will be enriched by her sister; but I get to watch it unfold every day.
Tonight, I was reading Fiona and Petra a pop-up book about safari animals. Each page begins with clues, and when you open the next page, you find a 3-D version of the animal that was clued. “My skin keeps me cool when I’m not in the water. What am I?” Gray eyes poked from a lake’s surface.
I pecked on Fiona’s talker. “What. Am. I?”
Fiona tapped open the “animals” page on her talker. “Scorpion,” she said.
“Elephant,” Petra said.
“Okay, let’s find out,” I said, and hit “Turn,” on the talker. Fiona turned the page.
A giant hippo unfolded from the book. I used an occluder — a black square of construction paper with a square hole the size of the talker icons — to highlight a word on the talker. Fiona hit the highlighted word.
“Hippo,” the talker said.
“Hippo!” Petra said.
The book ended. Eventually, we all disbanded from the couch. I went to the kitchen for something, and Fiona followed. But when I returned to the living room, I found Petra leaning over her sister’s talker. I found her holding the occulder. She was highlighting words with it, pressing her finger on the words, and repeating them back to herself.