Our daughter Penny—a fourth-grader who has Down syndrome—has always loved books. It started with snuggling into an adult's lap when she was very little. Then she learned to flip through pages on her own by mimicking the adults in her life. From there came the laborious process of sounding out words, connecting the part of her brain that sees the symbols on the page with the part that processes language. And after that? Hours and hours and hours of practice. Then all of a sudden, she could read, and every day since has involved reading—in the car, at home, outside, inside, even on the sidelines of her brother's soccer games.
Reading serves a multitude of purposes in Penny's life. It's an area of strength and comfort in a world that moves more quickly than she does. It's a way to connect with others through the shared experience of a beloved story. And it offers a way for her to understand her own context. Penny gravitates toward realistic fiction—almost all of the books she loves take place in elementary schools in America. No fantasy, science fiction, biography, or history for her. She wants characters that teach her about the here and now, that help her find her place in the world, that demonstrate how her life is a story too.
Recently, despite Penny's proficiency at decoding (a fancy word for being able to sound out every word and read sentences with the proper intonation without having to stop a lot), her ability to comprehend the story has lagged. As she gets older, so do the characters in her favorite books. Social interactions become more nuanced. Characters change. Vocabulary becomes more complex. Events happen and readers have to infer feelings. For the first time, Penny has needed support in reading.
Like Penny, most children with trisomy 21 will learn to read. And like Penny, most of them will need support along the way. For parents of children with Down syndrome, a combination of strategies for typical kids and specific to children with Down syndrome should provide a way for children and parents to share the pleasure of reading. As parents, we can:
In Penny's case, we're taking a three-tiered approach. Her speech therapist is using Linda Mood Bell's Visualization and Verbalization program to help her create a picture of the story she's reading. Her classroom teacher makes sure she writes a summary of every chapter she reads in school. At home, now that I know Penny has trouble with comprehension, we're reading fewer pages each night and talking more about the books we read together. She recently brought home Wonder by RJ Palacios, the story of a fifth-grader named August who has had 27 surgeries to correct his facial anatomy. After each chapter, we ask questions—why August's mother was worried before she held him for the first time, whether kids at school are being kind or mean, why August wants long hair.
Penny is gaining skills that will help her in other subjects, and discussing these stories might even help her navigate the tween years ahead if she can better understand social contexts and nuances. But perhaps most important of all is the experience of snuggling side-by-side under the covers on a crisp fall night, entering back into a world of people and places we have grown to care for, and enjoying, together, a good book.
Amy Julia is the mom of three kids who love broccoli and hot dogs, and who ask for lollipops every day! Her guilty pleasures are chardonnay and Diet Coke. She is also the author of Small Talk: Learning from my Children About What Matters Most and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. Visit her at amyjuliabecker.com.