Updated: Oct 7
Each year, nearly 1 in 700 children are born with Down Syndrome (DS), a condition that affects as many as six million people worldwide. I've had the privilege in my life of working with two spunky, formidable women with DS and of counting several young people with DS and their families among our friends, my children's friends, and our community. Children like Sofia Sanchez, who helped produce a fabulous new picture book about inclusion (more on this book and others in a moment) ...
About Down Syndrome Awareness Month
For them and for so many others, I'm excited to share that this month is Down Syndrome Awareness Month. It's a time to celebrate individuals with DS and their families, to share their stories, and to learn about DS and from those who experience it. It's also about inclusion.
Learn more about the importance of celebrating DS Awareness Month from Juan Castillo and his family:
DS is a congenital (genetic) condition, NOT a disease. It's not something you can "catch." DS affects the chromosomes in a person's body. These are the parts of our cells that contain our genes, or genetic material, which tells our body how to grow and do things. Individuals with DS have an extra chromosome, which can affect their development in a variety of ways. No two people with DS are exactly like any more than any other two people are, but just like people without DS, individuals with DS have families and friends, skills and interests, hopes and goals. They go to school, work, participate in sports, make art and music, explore the wilderness, win awards, write books, act, you name it.
Here's a great video, for kids, about Down Syndrome, genes, diversity and inclusion ...
Representation in Children's Books
Seeing yourselves in books matters. Learning about and empathizing with people different from you through literature and other media matters. To that end, check out this fabulous book from Margaret O'Hair and Sofia Cardoso, inspired by and produced in collaboration with Sofia Sanchez, a 12-year-old girl with DS.
We need more children's books that feature young people with DS in authentic ways, but here are some others, in addition to You Are Enough: A Book About Inclusion, that are already out there:
My Friend Isabelle by Eliza Woloson and Bryan Gough
My Friend Has Down Syndrome by Amanda Doering Tourville
Why Are You Looking At Me?: I Just Have Down Syndrome by Lisa Tompkins and Ryan Eubanks
I Know Someone with Down Syndrome by Victoria Parker, Ashley Wolinski and Matt Siegel
My Friend Has Down Syndrome by Jennifer Moore-Mallinos, Núria Roca and Marta Fabrega
The Little King and His Marshmallow Kingdom by Louis Rotella III, Mark Chickinelli
47 Strings: Tessa's Special Code by Becky Carey, Carrie Stidwell O'Boyle and Bonnie Leick
A Children's Book Author with DS
We also need more books written and illustrated BY or developed in collaboration WITH individuals with Down Syndrome. While researching a few things as I worked on this blog, I failed to find an autobiographical picture book that I had been searching for but I did find this author, Marcus Sikora. As a devotee of the haunted holiday, I was thrilled to see that he had produced (you got it) a Halloween picture book! Check out the book trailer:
Then go read this fantastic interview with Marcus and his mother, Mardra, on Huffington Post! It's amazing what you find when you look ... Wowsa.
Mardra is an author, too: The Parent's Guide to Down Syndrome by Jen Jacobs and Mardra Sikora.
To learn more about Down Syndrome Awareness Month and individuals with DS, visit the "Down Syndrome Awareness Month & What it Means to Me!" page of the National Down Syndrome Society. You can download some great resources there, including:
Other books about DS, recommended by NDSS, include:
A Parent’s Guide to Down Syndrome: Toward A Brighter Future. Pueschel, S. (2000). Baltimore, MD: Brookes Publishing.
Babies with Down Syndrome: A New Parents’ Guide (Third Edition). Skallerup, S. (Ed.) Bethesda, MD: Woodbine House. (2008)
Downs: The History of a Disability. Wright, D. New York, NY: Oxford University Press. (2011)
Tales of Normansfield: The Langdon Down Legacy. Merriman, A. Beccles, UK: The Down’s Syndrome Association. (2007)
The Guide to Good Health for Teens and Adults with Down Syndrome. McGuire, D. and Chicoine, B. Bethesda, MD: Woodbine House. (2010)
I hope you'll take some time this month to learn more about DS, and read and share some of the wonderful titles listed above. I'll leave you with this fantastic video featuring Chelsea Werner, 4x U.S. Special Olympics Champion and 2x World Champion in gymnastics ...