Allen: The book we made about Serena’s surgery was really was our primary vehicle for communicating with Mallory, our older daughter. She loves books, they’re a very useful vehicle to explain information to her, and seeing that the book was about her really piqued her interest. It gave us a chance to focus on telling the story in a way that was palatable to a four year old, and a way that was very focused on her as opposed to Serena, our younger daughter. If the book was “Serena this” and “Serena that,” it probably would have been okay, but putting it from the perspective of Mallory I think helped her think about how this is going to affect her and her life.
We made a point to make it not scary, and focus on the positive things, “Oh, you get to spend this time with Grammy and Grampy, then you’ll get to come up to Boston and stay in a hotel for a night.” We crafted it around how can we put this in the most positive light that we can? We told her about “an operation coming-” using “operation” instead of “surgery,” operation is a less scary word, and we made the book so she could color it.
We shared the book with all the adults in her life, so at her preschool all of the teachers got to read the book, so they knew how we were communicating with Mallory, so that it would be consistent. I think doing all of those things really helped prepare Mallory in a way that was just crafted very carefully so that she wasn’t going to be over anxious about it. She’s already going to be anxious enough with us leaving the house, so we really wanted to mellow it out.
Miranda: The other thing that worked really well is that it gave us time to think about how we wanted to talk about it with her, and it helped us figure out things like, what words do we want to use? What do we want to emphasize? The adults we gave it to said, “Thank you, because we want to talk about it like you’re talking about it. This gives us all exactly the same language.” And we said, “Could you please follow this script? Please don’t deviate from this script.” And they all appreciated that, because at the end of the day, they want to help, and they want to do everything that’s going to help, and what’s going to give a four year old the greatest comfort is if everyone’s saying the same thing.
And the other thing was that she could follow along in the book like when she got to Boston, she knew “That’s where we are in the book!” And when we got home from Boston, she was like “Okay, can we have our ice cream sundaes now?” Because we promised her we would get a big family ice cream sundae when we got home and everyone was happy and healthy. And then at the very end of the book, I said “Okay Mallory, the book is finished” and I think that was good closure for her. That she doesn’t have to think about that book happening anymore, that the book is done, it’s closed. So that was pretty much the only way we talked to her about it. She had lots of questions and we answered those questions, but that was really our primary vehicle.
Allen: The book was helpful for us too.
Miranda: And even the nursery school teachers said “I feel better having read this book!”
– Miranda and Allen, parents of Serena, age 2, ASD