A Down Syndrome Reading List – The Good and The Bad

THE FOLLOWING LIST IS NO LONGER BEING UPDATED, AS THIS BLOG HAS MOVED TO Life As I Know It.  I CONTINUE TO READ PRETTY MUCH WHATEVER I CAN GET MY HANDS ON CONCERNING NOT ONLY DOWN SYNDROME, BUT DISABILITY IN GENERAL.  PLEASE CHECK OUT MY BLOG DEVOTED TO BOOKS THAT RELATE TO DOWN SYNDROME AND DISABILITY: Disabi(LIT)y.  Thanks!

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If you’re a reader like I am, here is a list of books I’ve read that in some way pertain to Down syndrome or other disabilities/special needs, along with my own thoughts on each.  If you would like to suggest a book pertaining to Down syndrome or special needs to be added to this list, please contact me at lmorguessATgmailDOT.com

Fiction

The Memory Keeper’s Daughter by Kim Edwards: Ironically, I read this when I was pregnant with Finn, but didn’t know that the baby I was carrying had Down syndrome. This novel tells the story of a couple expecting twins in the 1960s. The night the wife goes into labor, weather prevents her obstetrician from making it to the hospital to deliver her babies, and so her husband, the babies’ father, who is a doctor, though not an obstetrician, delivers the babies himself. He is shocked to discover that the second baby, a girl, has Down syndrome. His wife is in the usual drugged stupor of childbirth that was routine for the time, and so he hands the baby girl to the nurse and tells her to take the baby to the institution where babies like that were placed as a matter of course back then. When his wife recovers her faculties after giving birth, her husband tells her that the second baby died. The nurse can’t bear to leave the baby at the institution, and moves away and raises her as her own daughter, while the girl’s biological mother mourns her baby daughter’s death for the next few decades.

This is my synopsis from memory; it’s been close to four years since I read it and I may have some of it wrong. I do remember being very much sucked in by the story and liking it very much. It was a popular book club pick at the time, and my book club discussed it, though I don’t remember much, if anything, really, from the discussion, except that I had Finn right there under my shirt. It’s strange for me to think about it now, how I no doubt participated in the discussion with my own opinions and preconceived notions about Down syndrome. I keep meaning to re-read this book, just to see if I might look at it with an entirely different eye now.

Jewel by Brett Lott: The story of a woman who gives birth to a baby in the 1940s with Down syndrome – though I don’t think the term Down syndrome is used at all in the novel. In keeping with the time period, the little girl is referred to as “a Mongoloid” and “retarded.” Probably a pretty realistic picture of what it would have been like back then to have a child with Down syndrome and not institutionalize her, as was commonly done. No social services or resources in place, and with only iffy medical care, the mother in this story is a determined trailblazer for her time, demanding the best life possible for her daughter. I remember really liking this book.

Memoirs

Roadmap to Holland by Jennifer Graf Groneberg: I still remember this book arriving in the mail via Amazon while Finn was in the NICU recovering from surgery. I didn’t order it and had never heard of it, and it turned out to be from my friend Jodi. An avid reader like me, she knew that I might find comfort in the written word. She chose the perfect book to send to me; I still have vivid memories of devouring this book at home and in the NICU as Finn slept. In it, the author tells her story of having twin boys – one of them with Down syndrome – and navigating the ups and downs, joys and heartbreak of the twins’ first two years. I remember finding a great deal of comfort in being able to identify so deeply with so many of the feelings she described having. I loved this book, and have plans to re-read it in the coming months.

Gifts by various authors: This is a collection of essays by parents of children with Down syndrome. Each essay tells of the unexpected gifts of raising a child with Down syndrome. Some are raw, some are saccharine, all are heartfelt. Inspirational, and that’s the point. A good book for someone who doesn’t want to take on a whole book containing one long story. I have to say that I remember noticing something about this book right off that didn’t sit well with me when I read it during Finn’s infancy, and still rubs me the wrong way, and that’s this from the back cover:

“This fine book helps dispel the fear and misinformation about Down syndrome that many parents and prospective parents face. As these deft essays convey, the world would be a sweeter place with more Down syndrome citizens, not fewer.” –George F. Will

Um, Person-First Language please? Especially on the cover of a book about Down Syndrome?!? Also, I don’t know, maybe it’s just me . . . elevating people with Down syndrome bothers me as much as putting them down based on their having Down syndrome. It’s just another form of discrimination, and it bothers me. But I should probably leave that topic for a separate post.

Expecting Adam by Martha Beck: I know this book was, at one time, a best seller, and widely read by all kinds of people, not just parents of children with Down syndrome. It was recommended to me by a friend (who is a mom, but not a mom of a child with Down syndrome) shortly after Finn was born. I honestly don’t remember a whole lot about this book except that it’s full of references and allusions to the supernatural, and that, my friends, is just not up my particular alley.

Choosing Naia by Mitchell Zuckoff: A young couple decide to have a baby, and during the course of routine prenatal screenings, they discover that the baby they are expecting has Down syndrome, as well as the most serious type of heart defect commonly associated with Down syndrome. Pages and pages are devoted to their agonizing over whether to continue the pregnancy or terminate. While I respected the honesty and forthrightness, it was painful to read about the whole process they went through, ultimately deciding to continue the pregnancy (thus, “choosing” Naia). It’s a good book, but not always easy to read. I wrote about it on Finnian’s Journey here: Choices; Finished.

The Year My Son and I Were Born by Kathryn Lynard Soper: The author recounts her experience giving birth to her seventh child and the aftermath of his diagnosis of Down syndrome. A pretty familiar story as far as memoirs about having a child with Down syndrome go; what makes it somewhat unique is the author’s Mormon faith and the large size of her family. I recall liking this book and giving it a good review, but I also remember feeling that the author told her story in a somewhat detached manner. Worth the read if you’re so inclined, though.

Karina Has Down Syndrome by Cheryl Rogers and Gun Dolva: This book is a recounting of a little girl’s first six years of life as told by her mother. It was a huge disappointment for many reasons, among them that it’s outdated, detached, extremely brief for the length of time it covers, and outrageously expensive for what it is. I originally reviewed it here. I don’t recommend this one, and can’t figure out why it has four out of five stars on Amazon.

This Lovely Life by Vicki Forman: Although not about Down syndrome, it is the author’s heart wrenching story of the extremely premature birth of her twins and the aftermath of that: one of the twins, a daughter, died four days after birth, and the other, a son, was kept alive against his parents’ wishes because they were well aware of the issues that would almost certainly face a child born at 23 weeks gestation. And, indeed, he lives a life with profound disabilities and suffering, and yet. this is a story of love and a bond that transcends this cruel fate. Parents of children with special needs will likely relate to much of it, but it is quite an emotional roller coaster of a read, and not for the faint of heart. I originally reviewed it here.

The Short Bus: A Journey Beyond Normal by Jonathan Mooney: Diagnosed with ADD and labeled “severely learning disabled” as a child, the author grew up riding the “short bus” and attending special ed classes where he came to feel marginalized and different. The short yellow school bus came to symbolize these feelings for him, and as an adult he buys a retired “short bus” and goes on a cross-country odyssey to hook up with different people living on the fringes of society, usually (but not always) as a result of some disability. He hopes his trip will allow him to come to terms with and finally transcend the feelings of marginalization he’s carried around for so long. I absolutely loved this book, and talked about it here and here. A real gem.

The Shape of the Eye by George Estreich: Have I mentioned how much I loved this book? Let me say it again, in case you were absent before: I LOVED this book. Written by a poet/stay-at-home-dad, this is not only the story of a little girl born with Down syndrome, but also an examination of the history and evolution of our attitudes about Down syndrome. It’s also a story very much about ethnicity, family, and belonging. If I could get everyone I know to read this, I would. I also think it should be required reading for doctors. I reviewed this book here and interviewed the author here.

A Good and Perfect Gift by Amy Julia Becker: A pretty familiar story as far as this type of memoir goes: the author recounts her experience having a daughter with Down syndrome. I didn’t feel that this book offered anything unique except heavy-handed Christianity (which I think tends to alienate non-Christians), and I was also put off by how focused the author seemed to be on her daughter’s achievements. I reviewed this book here. Not my cup of tea.

Bloom: Finding Beauty in the Unexpected by Kelle Hampton: In the midst of living what she deemed a “perfect” life, Kelle Hampton gives birth to her second daughter, only to realize almost immediately that her new baby has Down syndrome.  In this book she chronicles her first year coming to terms with this unexpected turn of events, both with writing and lots of photographs.  I’ve made no secret about my feelings about the Kelle Hampton phenomenon or her book – not crazy about either.  I reviewed her book here.  Be sure to read all the comments for your entertainment!

Non-Fiction

Babies With Down Syndrome by Karen Stray-Gundersen: I think almost every parent who’s had a baby with Down syndrome has at least heard of this book, if not bought it or had it given to them. It says on the cover that it’s “The First Book Parents and Families Should Read.” I’m here to tell you that it’s most definitely not the first book parents and families should read. You need a fairly thick skin to make it even partway through this book. It’s full of unattractive black and white photos, statistics, and cold, hard facts about Down syndrome. And if you’re new to this, it might be easy to think that your child will look like one of those depressing photos, and that every statistic and cold, hard fact will apply to your child. And that is not the case. If you are a new parent of a child with Down syndrome, do yourself a favor and steer clear of this book. If it’s already in your possession, throw it in the trash, or at least pack it away in the attic until you are farther down the path in this whole adventure.

Disability is Natural by Kathie Snow: This behemoth examines how disability has historically been treated through the ages, as well as how disability is still treated today, and how parents of kids with disabilities can – and should – rethink therapy, rehab, and special education. This is a tiny summary of a big, fat book, so there’s a lot more to it than that, but that sums it up. This book really validated a lot of feelings I was having through Finn’s first year and a half when we still had early intervention therapists coming to “work” with him, and ultimately it’s what gave me the courage to opt out of early intervention altogether – and we haven’t looked back. I really recommend this book for every parent who has a child with a disability for no other reason than to see another side to things in order to make truly informed decisions.

The Politics of Down Syndrome by Kieron Smith: This slim volume examines how Down syndrome has been treated by the medical profession and society historically, and how our attitudes today are still very much shaped by old prejudices and outdated ideas about Down syndrome.  While the author has a young daughter who has Down syndrome and he does say in the book that having her has definitely influenced his own evolving views, this is not a memoir; it’s more a sociological study.  While it focuses on the state of things in the UK (where the author resides), most of it can definitely be applied to the U.S.  The only criticism I have is that the book could use some serious editing; I noticed a lot of typos, poor punctuation, run-on sentences and incomplete sentences.  The content is excellent, but it needs a little polish.  A must read for parents, expectant parents, educators, and medical professionals.

Children’s

While not all of the following deal specifically with Down syndrome, they do deal with topics like diversity and tolerance.

Hi, I’m Ben … And I’ve Got a Secret! A short, simple book aimed at young children. Told in first person by Ben, this little boy introduces himself and talks about all the things he can do, while inviting the reader to guess his secret.

We’ll Paint the Octopus Red Emma has a new baby brother, and her parents explain to her that he has Down syndrome. What does this mean for Emma? A sweet story for young siblings.

The Worst Best Brother This is a follow-up to We’ll Paint the Octopus Red. How does Isaac having Down syndrome fit into Emma’s world now that they’re both a little older?

Ruby in Her Own Time A sweet story late bloomer Ruby, the duckling who does everything late, but in the end shows everyone how magnificent she is anyway.

The Junkyard Wonders A classroom of misfits discover their value and their own inner genius.

I Live With Peter Pan Written by the mother of a child with Down syndrome, the author hit upon the analogy of Peter Pan as a way to explain Down syndrome to her other children.  I’m not crazy about this book, as it promotes a stereotype of people with Down syndrome being forever childlike – a stereotype that should have been done away with years ago.  I reviewed this book here.

Meet Annie Written by the mother of a child with Down syndrome, this short and sweet book aimed at young children introduces Annie who is just like you and me in all the ways that count to little kids: she likes to play with her toys, she likes to splash around in her swimming pool, and she sometimes gets in trouble. Annie has Down syndrome, though.  Touching on differences without resorting to stereotypes, I really liked this book.  I reviewed it here.

Also, Deedah is a wonderful short documentary for children and adults alike. In it, seven-year old Charlotte, is interviewed by her mom about her younger brother Jonathan, who has Down syndrome. A fabulous little movie.