Back in May 2020—two months into the COVID-19 pandemic—my life whirled down another unexpected path when my baby, due in September 2020, was diagnosed with Down syndrome.
The news was particularly overwhelming for my husband and I because we had no experience with Down syndrome. The unknown is frightening, and much of the information we found right after the diagnosis wasn’t positive or hopeful. I was devastated, unsure what my baby’s future would look like… and my family’s, as a result.
But knowledge is the antidote to fear. As my husband and I discovered in the weeks and months after the diagnosis, there are more resources and opportunities than ever before to help individuals born with the condition.
In the 1980s, the National Down Syndrome Society began hosting a Down Syndrome Awareness Month every October. In honor of that, and to help spread information—and acceptance! Love! Joy!—for kids like Oak, I’ve created a list of kidlit books featuring characters with Down syndrome.
These books don’t necessarily educate about Down syndrome; rather, they present characters with Down syndrome (main or supporting) simply living their lives, navigating their worlds and families, even having adventures. Because representation matters!
MIDDLE GRADE BOOKS
A Storm of Strawberries by Jo Cotterel
Twelve-year-old Darby, who has Down syndrome, loves living on her family's strawberry farm. But a big storm is coming, and it threatens to destroy everything she and her family hold dear. This weekend is the annual chocolate hunt, and all Darby can think about is spending time at it with her big sister, Kaydee. But this year Kaydee's friend, Lissa, is staying over for the weekend, and she’s stealing all of Kaydee's attention. And to make things worse, the strawberry farm is hit by a tornado. Although the family is prepared for the tornado, they aren't prepared for the storm of emotions that surface when a truth is brought to light. With tension rising within the family, can Darby mend what's been broken when it seems like no one listens to her?
Marcus Vega Doesn’t Speak Spanish by Pablo Cartaya
After a fight at school leaves Marcus facing suspension, Marcus's mother takes him and his younger brother, who has Down syndrome, to Puerto Rico to visit relatives they do not remember. While there, Marcus starts searching for his father, who left their family ten years ago and is somewhere on the island.
The Jigsaw Puzzle King by Gina McMurchy-Barber
When eleven-year-old Warren and his family move to a new city, his twin brother, who has Down syndrome, attracts too much attention. But while Bennie may be oblivious to those who are uneasy with him, Warren notices every smirk, comment, and sideways glance. Warren is tired of flip-flopping between trying to fit in at his new school and protecting his brother. Sometimes he thinks his life would be easier if he had no brother. But what he really needs is to stop worrying about what other people think.
YOUNG ADULT BOOKS
Born With: Erika and Gianni by Lorna Schultz Nicholson
Fifteen-year-old Erikia loves to dance and sing and make people laugh. She tells people that she was born with an extra gene, but her sister has to buy hers at the mall (ha, ha!!). Being in three dance numbers in the school production of Grease is a big job, but with Gianni’s help, Erika knows she can be a star.
Like Erika, who was born with Down Syndrome, Gianni loves to sing and dance. He also knows that he was born different from the other boys in his school—but is he that different from Blake, the cool, attractive male lead in the school play? Or is he just imagining that the sparks between Blake and him are mutual?
Serendipty’s Footsteps by Suzanne Nelson
For Dayla, Ray, and Pinny, one pair of shoes connects them through time and place over decades and continents. Dayla is the only member of her family to survive the atrocities of Nazi Germany and begin life anew in the United States. Ray is a troubled orphan who has been in and out of foster care and has decided to run away and start over in New York. And Pinny is a quirky idealist with Down syndrome who believes that New York holds the answer she has been seeking.
Sing Fox to Me by Sarah Kanake
In 1986, the year the Tasmanian tiger is officially declared extinct, fourteen-year-old Samson—who has Down syndrome—and his twin brother Jonah travel from the Sunshine Coast to the wild back country of west Tasmania to live on a mountain with a granddad they’ve never met—a grieving man who’s spent decades searching for his missing daughter, lost to the Tasmanian wilds.
The mountain isn’t the twins’ home, but they become entranced in different ways with their surroundings. While Samson finds delight all around, Jonah develops a dark obsession that ties in with Clancy’s desire to bring his daughter home. There’s something out there in the bush, something that seems set on tearing this family to pieces…
Looking for other books featuring characters with Down syndrome? There’s a whole database available online! Check it out here: http://theroadweveshared.com/down-syndrome-in-literature
Sam Taylor grew up in Arizona’s desert and now lives among Connecticut’s trees. When not writing, Sam is busy being mom to the world’s cutest boys, whirling through dance workouts, and baking too many cakes. She does not possess fire magic, but does have one fire-colored cat. WE ARE THE FIRE is her debut novel. Website: www.samtaylorwrites.com Twitter: @jsamtaylor Instagram: @jsamtaylorauthor