Parenting, Resources

A Reading List for Parents of Kids With Down Syndrome and Other Special Needs

When my daughter Sophie was diagnosed with Down syndrome at four days old, the last thing I wanted to do was read a book about it. I couldn’t look at so much as a pamphlet. It was an odd response for a journalist — but for a long time I couldn’t bear to do much more than hold my baby and watch bad TV and cry and, eventually, let her teach me herself about Down syndrome. That said, there was a lot more to learn, so it’s a good thing my husband is also a journalist, and had a different response. He was in the hospital library from Day One. Ultimately, I joined him in his research quest — gathering materials about Down syndrome (everything from documentaries to ancient magazine articles to books) and putting them in a big Rubbermaid for when I was ready. Today — more than thirteen years later — I’ve still got lists and piles (more read than not), and I’m here to share with you my favorite resources for parents of kids with Down syndrome. Much off this list would be good for any parent of any kid with special needs, and some for family members or friends. There are a few places to go for additional information and community. And there are, simply, some good reads on this list that anyone might enjoy.

Life as We Know It: A Father, a Family, and an Exceptional Child by Michael Berube

This is the first book I received about Down syndrome; my best friend brought it to the house when Sophie was less than a week old. It took me a while to get around to reading it, but I was so glad I did, and Berube has been my hero ever since. An academic who happens to focus on (among other things) disability, Berube writes honestly about his son Jamie, who was a child when this book was written, and about disability in general. Last year, Berube published a sequel of sorts, told from Jamie’s point of view, appropriately entitled Life as Jamie Knows It: An Exceptional Child Grows Up.

My Friend Isabelle by Eliza Woloson

There aren’t enough children’s books about Down syndrome, and this is one of my favorite children’s books regardless of subject. The illustrations are adorable, and the story — about befriending someone who's a little different — is simple and universal. I have given this book to so many people I’ve lost count.

Rosemary: The Hidden Kennedy Daughter by Kate Clifford Larson

Rosemary Kennedy — sister of President John F. Kennedy and the daughter who prompted Eunice Kennedy to found the Special Olympics — did not have Down syndrome. In fact, until her father agreed to have her lobotomized when she was in her 20s, her intellectual disabilities were fairly mild. That is only the tip of what will infuriate you as you read this book about politics, family, shame, disappointment ... and the good that can come out of all of it.  I couldn't put this book down, and even though it’s an old story and a different one, it resonated strongly with my own experience as Sophie’s mom.

National Down Syndrome Society www.ndss.org

Not all Down syndrome support groups are created equal. I learned that on the local level early on, when I had to choose between the touchy-feely, smooch-on-your-angel-baby support group and the info-packed, hard-charging educational support group. In the end, I forged my own path, and ultimately it led to a national group, the National Down Syndrome Society. The other significant national DS group appears to exist in order to throw an annual conference (which is not without its merits), but NDSS seems much more devoted to outreach across the country and advocacy on Capitol Hill. Its leader, Sara Hart Weir, is a dynamo who travels constantly to spread the gospel of inclusion and the importance of measures like the ABLE Act.

Facebook

My real support group is Facebook. I’m more than happy to admit that, and to say that I’m not sure what I would have done as the mom of a kid with special needs if I hadn’t been able to slowly connect with (and ultimately meet in person) dozens of parents in similar boats. I do warn caution: It took me years to gather a group of like-minded friends (not everyone who happens to have a kid with Down syndrome is meant to be your soul mate — not mine, anyway), and I did it slowly, finding a couple of wonderful people who introduced me to others. There are also some terrific FB groups (and some not-so-great ones, again, be cautious) like Inclusion for Children with Down Syndrome, 11,000 strong and devoted to parents discussing school inclusion for their kids.

Far From the Tree by Andrew Solomon

Solomon was already one of my favorites (The Noonday Demon is a terrific book about depression, both from an anecdotal and historical perspective) and then he wrote Far From the Tree and won my heart forever. He devotes a chapter each to “differences” ranging from blindness to dwarfism to autism (and yes, Down syndrome) and teases out what it means for “typical” parents to interact with a kid who rolled a little farther from the apple tree than anticipated.

Disability Scoop disabilityscoop.com

This website touts itself as “the premier source for developmental disability news,” and that feels about right. You can subscribe to their newsletter and catch up on headlines about everything from the latest pertinent U.S. Supreme Court case to individual family stories to what’s going on in different states when it comes to education, health care, and other public policy issues that affect kids with Down syndrome and other disabilities.

The Mighty themighty.com

If you’re feeling like blogs are so 2010, but you want to read personal stories about the experience of parenting kids with Down syndrome — along with some practical advice here and there — The Mighty is for you. You can also sign up as a contributor and see if they’ll publish your own musings. They don’t pay, but The Mighty does have a big following.

Ruderman Family Foundation rudermanfoundation.org

Based in Massachusetts with offices in Israel, this family foundation is devoted to inclusion of people with disabilities, and they take their mission seriously. Ruderman has released attention-grabbing reports on topics including the portrayal of people with disabilities by non-disabled people in Hollywood and media coverage of the use of force by police against people with disabilities. Follow the foundation and its director on Twitter (@rudermanfdn and @jayruderman) to keep up with current events and opinions.

Entwined: Sisters and Secrets in the Silent World of Artist Judith Scott by Joyce Wallace Scott

This is an intense and fascinating story of fraternal twin sisters, their differences, and ultimately their reunion. I’ve long been interested in the artwork of the late Judith Scott, who had Down syndrome and was profoundly deaf (she passed away in 2015) and was an important fiber artist. This is a story of family secrets and creative ones, too.