Following is a list of some notable books I’ve read that in some way pertain to Down syndrome or other disabilities/special needs, along with my own thoughts on each. For more, please visit my disability book blog: Disabi(LIT)y.
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.
The Unfinished Child by Theresa Shea: This novel is a doozy. It tells parallel stories of a modern-day woman who finds herself unexpectedly pregnant at the age of 39 and is faced with the very real implications of prenatal testing and the hard choices those foist on us, and a young woman in the 1940s-’50s with Down syndrome who is institutionalized. How these two stories come together, not to mention each story in its own right, packs an emotional punch you will not soon forget. A MUST read. I reviewed it here.
Memoirs of an Imaginary Friend by Matthew Dicks: Told in first person by a boy’s imaginary friend, this is the story of a boy with autism (though “autism” is never mentioned in the book) who is abducted by a paraprofessional at his school. At the heart of the story are messages about love, loyalty, and sacrifice. I enjoyed it and reviewed it here.
The Mouse-Proof Kitchen by Saira Shah: a novel about a young upwardly mobile couple who give birth to a profoundly disabled baby girl – she has polymycrogyria and a host of other issues. The author actually has a daughter with the same diagnosis as the child in her novel, and this story is her attempt, apparently, at living out the worst of what she has thought and felt, at least on paper. I struggled with this story. The writing is good, but the characters are so self-centered and self-indulgent – to the detriment of their baby – I couldn’t dredge up any compassion for them. Mostly, the story made me angry. I reviewed it here.
Where the Moon Isn’t by Nathan Filer: It was Matthew’s idea to convince his older brother, Simon, to sneak out of the caravan the family was vacationing in at Ocean Cove Holiday Park in their native England that fateful night. At the time, Matthew was nine, and Simon 12 – though Simon, who has Down syndrome, seemed the younger of the two. Something terrible happens as the boys are sneaking about in the caravan park that night, as their parents slept peacefully, unaware, and only Matthew returns to the caravan.
Now, ten years later, Matthew is still trying to come to terms with his brother’s death and his part in it . . . but now, Matthew is schizophrenic, and he hears Simon talking to him. A lot. Matthew thinks he can bring Simon back.
This book really moved me and I couldn’t put it down. I reviewed it here.
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!
Sun Shine Down by Gillian Marchenko: A lovely, raw memoir by a pastor’s wife who gives birth in Ukraine to a baby with a surprise diagnosis of Down syndrome, and how she came to terms with it. Gillian is a gifted writer; I only wished the book were longer. I reviewed it here.
The Reason I Jump by Naoki Higashida: Subtitled “The Inner Voice of a Thirteen-Year Old Boy With Autism,” this book is the translated-from-Japanese version of the book written and published a number of years ago by a non-verbal Japanese adolescent with severe autism. Insightful, but not mind-blowing. I reviewed it here.
The Anti-Romantic Child by Priscilla Gilman: A lyrical, poetic memoir about raising a child on the autism spectrum. What is curious about this memoir is that Gilman’s son was not officially diagnosed with autism until after her memoir was published, so the book is (a little curiously and frustratingly) absent that, which may lead the reader to certain conclusions about the author and her feelings about disability. After a brief correspondence with the author after my reading of the book, I gained a better insight. I think an updated edition of the book, perhaps with an Afterword, might be in order. All in all, a beautifully written book by a mother who clearly loves her children fiercely. I reviewed this book here.
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.
Down Syndrome Parenting 101 by Natalie Hale: Some useful information on navigating the school system and on literacy for kids with Down syndrome; other than that, a lot of fluff. I reviewed this book here.
Far From the Tree by Andrew Solomon: At its core, it’s a study of the relationships between parents and “alien” children – that is, children born with differences so fundamental as to make them seem alien to their parents. The chapters include such titles as “Autism,” “Schizophrenia,” “Down Syndrome,” “Rape,” and “Transgender” to name a few, bookended by the first and last chapters titled “Son,” and “Father,” recounting the author’s own “alien” identity as a homosexual and how that played out in his role as a son, and then as a father.
How do these families forge bonds? How do they cope with the challenges inherent in the differences that divide them? How do these children find their own identities when those identities can’t necessarily be passed down to them by their parents – and how do such parents nurture or squelch those identities? These are the questions examined at the heart of this book.
Fascinating from a sociological point of view, but bleak. I reviewed it here.
Three Generations, No Imbeciles by Paul Lombardo: A rich historical narrative of the not-much-talked about eugenics movement in the United States during the early to mid-twentieth century, and the pivotal Supreme Court case, Buck v. Bell, that drove much of it. Tragic and eye-opening, this should be required reading not only for those touched by disability, but in every U.S. History classroom. I reviewed it here.
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.
My Friend Isabelle by Eliza Woloson: A very short, sweet book for young children narrated by a little boy, Charlie, who tells us about his friend Isabelle, who has Down syndrome. Although Down syndrome is never mentioned, it’s a wonderful springboard for a discussion about differences, acceptance, and friendship. I read this book to my son Finn’s TK class, and it was well received; the teacher even asked for a copy to add to the class library.
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.