Big dreams, big joy, and inspiring stories about unbreakable connections. These are the things we celebrate during Down Syndrome Awareness Month (October). And what better way to shine a light on lives touched by Down syndrome than through books and the wonderful perspectives they offer?
While compiling this list of books to celebrate Down Syndrome Awareness Month, I came across so many incredible points of view from a variety of people, from a Manager of Grassroots Advocacy at the National Down Syndrome Society to a writer and champion of Down syndrome representation in fiction, and more personally, from my friend, Sherri Krekeler, who is mother to a son with Down syndrome. Krekeler says her relationship with him is all about “learning, growing, evolving together at just the right pace in just the right moments.”
With some help from Krekeler and other experts online, I’ve compiled both nonfiction and fiction titles for all kinds of readers, including parents, children, and young adults. There is a book in this list for all readers, whether we have Down syndrome ourselves, are parents or friends of someone with Down syndrome, or we simply want, in Krekeler’s words, to “shine a light and to grow our minds and our hearts.”
Nonfiction for Parents of Children with Down Syndrome
Fortunately, there is a wealth of books out there for parents of children with Down syndrome. Of course, that also means it can be overwhelming to decide which ones to read. Most of the following titles were recommended to me by Krekeler because they resonated most profoundly with her.
Bloom by Kelle Hampton
Hampton lets readers experience, through her eyes, the first year of life for her daughter, Nella, who has Down syndrome. It’s a journey full of fear, sadness, joy, and ultimately, transformation.
Krekeler was moved by the way the author doesn’t sugarcoat her thoughts, but rather sees “moments for what they are and the people for who they are.”
Bringing Your Baby with Down Syndrome Home: A Guide to the First Month by Jeannie Visootsak MD and Deslie Quinby
What can you expect during those very first days with your newborn with Down syndrome? This book provides both professional guidance from a medical doctor specializing in developmental-behavioral pediatrics as well as firsthand insight from a mother whose child has Down syndrome.
Babies with Down Syndrome: A New Parents’ Guide by Susan J. Skallerup (Editor)
Now in its third edition, this guide covers a comprehensive range of topics including the initial adjustment period, medical treatments, daily care, family life, learning development, and even legal rights and financial issues.
Krekeler told me this book was overwhelming to read all at once, but she enjoys reading it a few passages at a time. “In the beginning,” she told me, “I was reading it to absorb [and] learn.” Later, she approached this book with a more informed perspective, recognizing some parts did apply to her experiences and others didn’t.
Gross Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals by Patricia C. Winders
Parents will learn about the physiological reasons behind delays in gross motor development in children with Down syndrome. More than 400 photos with step-by-step instructions provide a physical development plan for children up to age 6, including skills for head control, sitting, using stairs, riding a tricycle, and more.
While Krekeler and her husband relied on this book while working with their son with Down Syndrome, they also recognized that they would find it “informative, practical and useful for all developing children.”
Books to Celebrate Down Syndrome Awareness Month: Other Nonfiction Perspectives
The Down syndrome community is full of diverse stories. These books offer glimpses into the lives of just a handful of the members of this vibrant community.
Count Us In: Growing Up with Down Syndrome by Jason Kingsley and Mitchell Levitz
Through a series of interviews, Kingsley and Levitz share their experiences growing up with Down syndrome. In addition to discussing their hopes and dreams, they cover a variety of topics including their careers, marriages, friendships, education, and more.
Six Percent: Down Syndrome: My Photographs, Their Stories by Graham Miller
Created by photographer Graham Miller, this collection of black and white photographs shares the experiences—some heartwarming, some painful—of eight families that include a member with Down syndrome. Miller shares more about this project in this interview.
Mongol by Uuganaa Ramsay
Uuganaa Ramsay grew up in Mongolia as a member of a pastoral population who are referred to as “Mongols.” When her newborn is diagnosed with Down syndrome, Ramsay confronts prejudice within her community. Although her son didn’t live long, Ramsay experienced a personal transformation as she developed the strength to stand up to bigotry and become a champion of love and tolerance.
Children’s Books for Down Syndrome Awareness
I asked Krekeler to help me narrow down the list of books that celebrate characters with Down syndrome or messages of inclusivity. Many of these titles are her own family’s favorites.
You Matter by Christian Robinson
Painted acrylic and collage illustrations help tell a story about how everything and everyone—big or small, old or new, human or not—matters in this world.
Sabeel and her Superheros by Ayah Sayyed
As Sabeel, who has Down syndrome, goes about her daily life, she discovers that she’s surrounded by superheroes, from the crossing guard to her therapist to everyone in her family.
Just Ask!: Be Different, Be Brave, Be You by Sonia Sotomayor and Rafael Lopez
In this book (yes, written by the Supreme Court justice), a group of friends sets out to plant a garden. Along the way, they learn that asking each other about their differences, including Down syndrome, diabetes, asthma, stuttering, autism, and more, helps everyone feel understood and less alone.
Kids Like Me…Learn ABCs by Laura Ronay and Jon Wayne Kishimoto
In this board book, a diverse group of children with Down syndrome help introduce each letter of the alphabet. Every image features a child holding an object, plus the uppercase and lowercase versions of the letter.
The Day You Begin by Jacqueline Woodson and Rafael López
Brought to life through lyrical prose and vivid illustrations, this is a story of what it’s like to feel like an outsider—whether it’s because of how we look, what we eat, where we’re from, or something else. But good things can happen when we’re brave enough to carry on—and maybe even to share our stories with others.
YA Fiction for Down Syndrome Awareness
Because YA readers are just beginning to shape their own perspectives on the world, it’s the perfect time to introduce them to diverse characters whose lives overlap with each other’s. Each of these stories feature at least one character who has Down syndrome.
Fade to Black by Alex Flinn
At the beginning of this story, which defies all stereotypes, teenager Alex is injured when someone shatters the window of his car. The mystery of who did it unfolds from the perspectives of three very different people: Alex, who is Latino and HIV-positive; Daria, who has Down syndrome and always tells the truth; and Clinton, who has been very clear about his dislike for Alex.
Dead Ends by Erin Jade Lange
Dane might be a bully, but he lives by a code: he doesn’t hit girls or kids with disabilities. When Billy D., a classmate with Down syndrome, interrupts one of Dane’s fights, it’s the beginning of an unlikely friendship that eventually leads them on a search for Billy’s father.
Head Above Water by S.L. Rottman
Sixteen-year-old Skye is a busy high school student juggling straight A’s, the swimming state championships, and a relationship with her boyfriend. While her single mother works two jobs, Skye looks after her brother Sunny, who has Down syndrome. As Skye tries to navigate all of her obligations, she’s challenged to figure out what’s important to her and who she wants to be.
Contemporary Adult Fiction for Down Syndrome Awareness
No matter our age, being instantly dropped into someone else’s world through fiction is a magical experience, whether it’s because we recognize ourselves in the characters or because we come closer to understanding those who are different.
The Memory Keeper’s Daughter by Kim Edwards
At the heart of this tale is a 25-year-old family secret: a set of twins separated at birth because one of them was born with Down syndrome. When Dr. Henry, delivering his own twins in 1960s Kentucky, realizes his daughter has Down syndrome, he tells his nurse to take the baby to an institution in an effort to protect the emotions of his wife. The nurse, however, decides to raise the baby as her own. Both families live separate lives until the past finally begins to reveal itself.
Sing Fox to Me by Sarah Kanake
Twin brothers Samson and Jonah are staying with their grandfather in the mountains of Tasmania. However, what was supposed to be a temporary visit turns out to be more permanent, and these three very different personalities—inquisitive Samson, who has Down syndrome; resentful and moody Jonah; and their grandfather, who is obsessed with finding his long-missing daughter—must learn to how to get through life together.
Jewel by Bret Lott
In 1940s Mississippi, Jewel, already a mother of five, gives birth to Brenda Kay. Months later, Jewel and her husband find out their baby has Down syndrome. Jewel rejects the suggestion to send Brenda Kay to an institution, and instead develops an unbreakable mother-daughter relationship with her.
No matter how you’re connected to the Down syndrome community, you’ll discover something inspiring when you read any of these books. After all, as Krekeler put it so well: “[W]e all come into books with different mindsets, different baggage, different perspectives, different sense[s] of time and place. It’s all these things that can shape our experience with that book.”
You can find more ideas for books that celebrate characters and themes about disabilities here. And to learn more about representations of disabled people in literature, start with this Book Riot contributor’s thoughtful perspective as a disabled woman.