Here's the Blueprint
"I have a story to tell you. It's a story with a lot of truth in it. Once you've heard it, you can make up your own mind about whether it leaves you a little bit happy, hopeful, or sad--or a mix of all three."
These words come from Jake, the narrator of What My Grandma Means to Say. What follows is a book intended for children in grades 4-6 who may have someone in their family with Alzheimer's. The story addresses the topic of dementia, and several pages in the back of the book provide answers to frequently asked questions.
Written by Canadian author JC Sulzenko and published by General Store Publishing House, the book is a high-quality paperback. Not exactly a chapter book, it is divided into readable chunks. A dozen or so illustrations by Gary Frederick add charm.
Jake and his mom live in the flat above his grandmother, but a cooking accident, added to previous troubling incidents, convinces Jake's mom that something is wrong with Grandma. The search for a diagnosis begins, and it ends with bad news: Alzheimer's. It's time for Grandma to move somewhere where she can be supervised. Jake resists the decision. The grandmother he knows is a lively world traveler and a champion bird watcher. He wants to hold on to that person, but her disease cannot be denied.
After Grandma is established in a retirement home, Jake becomes a regular visitor. He gets to know the the workers and adapts to the unfamiliar sounds and smells of the home. He also adjusts to his grandmother not remembering his name and being unable to carry on much of a conversation. Then comes one magical day in the garden, that Jake at first thinks will change things for good.
How the Story Came to Be
Inspired by a colleague's story about her mother's Alzheimer's, Sulzenko began writing what she thought would be a children's book. Instead, What My Grandma Means to Say became a play designed to teach children about dementia and its effects on families. It was performed dozens of times for school-age children, but the adults who saw it pressed Sulzenko for more. Where is the book, they wanted to know, until Sulzenko decided that a book was fated to be. Expanding the ten-minute play into a 48-page book required her to imagine a back story for Jake and his family, but it also allowed for the insertion of factual material not included in the play, which is basically a conversation starter rather than a comprehensive resource.
The Bottom Line
It wouldn't be accurate to say that this is the first book for children with Alzheimer's in their family. Maria Shriver's What's Happening to Grandpa comes to mind, and Getting to Know Ruben Plotnick deals with dementia in a subtler way. What sets this book apart is the voice of the narrator, a voice which author Sulzenko said pushed her out of the way when she began writing the play. In addition, few books for children have factual material of the breadth of that which Sulzenko includes. A discussion guide for teachers is available from Sulzenko's website, which also features a video about staging the play version.
Just so that you won't be caught unawares, the informative nature of What My Grandma Means to Say does not negate its emotional wallop. It's a rare reader who won't shed a few tears before the final page.