Not Always Happy by Kari Wagner-Peck

51sHRGqjqXL._SX331_BO1,204,203,200_Not Always Happy

by Kari Wagner-Peck

I stopped reading memoirs about raising a child with Down syndrome awhile back mainly, I think, because they all started seeming the same.  Most follow a fairly predictable trajectory: a child is born with Down syndrome, there is much grief, then acceptance, and finally celebration.  It’s not that there is anything wrong with this storyline (which, if I’m honest, fits my own storyline with regard to having my own child with Down syndrome), it’s just that after a time, I had read enough of them.  So when I saw mention of Not Always Happy – probably on Facebook, I can’t really remember for sure – and that it was funny, my interest was piqued.

Not Always Happy does stand apart.  Its subtitle, An Unusual Parenting Journey, is a true description not only in that parenting an atypical kid is bound to be somewhat atypical in itself, but because Wagner-Peck and her husband’s parenting journey has been atypical even in the context of raising a child with Down syndrome.  Also, this memoir isn’t the typical grief-acceptance-celebration storyline.

Wagner-Peck and her husband married a little later in life.  She was already in her mid-forties.  They wanted children – or a child – but decided to forego fertility intervention and set their sights on adoption.  They wanted a “typical” child on the young side.

“We felt we had made it quit clear the biggest disability we were capable of coping with was a child who was left-handed or color-blind.”

But when they get a call that a two-year old boy with Down syndrome is available through the state foster system, after an initial, brief hesistation, they decide that this boy is meant to be their son.  The more they learn about Thorin, they more they fall head over heels for him.

After a long and somewhat harrowing foster-with-the-hope-of-adopting process, during which it remained unclear if Thorin’s biological mother would relinquish her parental rights, Kari and Ward become Thorin’s adoptive parents.  Over the course of the next few years, they deal with Thorin’s health issues, behavior issues, and attachment issues, slowly but surely becoming a cohesive family.

Much of the story revolves around their experiences with schools, teachers and other staff as they attempt to make sure Thorin’s educational needs and rights are met.  So many of their experiences mirrored our family’s with respect to our son Finn’s schooling.  Reading the pages on which Kari recounts battles, demoralizing IEP meetings, scornful teachers, baldfaced lies by school district staff, and repeatedly coming up against brick walls in trying to get one’s child’s needs and rights met – my blood boiled at my own memories.  Eventually, the Wagner-Pecks pull Thorin out of school to homeschool him, which is also what we eventually did with Finn.

In one segment, Wagner-Peck recounts how she worried about how to tell Thorin that he has Down syndrome.  As I read this, I felt a twinge of recognition – I knew where this was going.  As I kept reading, my heart started pounding and I wondered, “Am I going to see my name written on these pages?”  Then she recounts how she sat Thorin down and impulsively told him that he has a superpower called Down syndrome, and how she recounted that conversation in an article for HuffPo, and how some people gave her crap for it.  I was one of those people; I remember reading her HuffPo article and responding to it with a blog post, which, if I recall correctly, she commented on.  When I bought her book, I didn’t remember her name as the woman who wrote that HuffPo article.

In any case, I really enjoyed her book.  Unfailingly honest, written with plenty of humor, heartfelt without being saccharine, I think every parent should read this to understand, if nothing else, some of the hell we parents of atypical kids go through at the hands of institutions that are supposed to serve our children.

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Three Children’s Books About Down Syndrome

For the last two years running, I’ve gone into my son’s classroom and talked to the children about Down syndrome, as Finn has Down syndrome.  I’ve begun my little talk by reading My Friend Isabelle to the class – which is a wonderful book, by the way: frank, sensitive, short and sweet, and never pitying or condescending.  This year Finn is in first grade, though, and I’ve wondered if first-graders might be a little beyond My Friend Isabelle.  So I’ve started searching for a good next-level book to read to a class.  Following are three I found on Amazon, and my thoughts on each:

UnknownWillow the Walrus-Educating Children about Down Syndrome

by Shelly Weiss

Aimed at ages 4 – 8, this book does a fair job of giving a brief description what exactly Down syndrome is – the triplication of certain chromosomes.  Beyond that, this book pretty much turned me off.  I think there is a real problem with attempting to portray Down syndrome embodied in a walrus, or any other non-human.  Presenting the person who has Down syndrome as not a person at all I think could end up being very confusing for kids in this age group, and lead to more questions than answers for them.  Further, the entire premise of the book is Willow, the walrus who apparently has Down syndrome, reciting a poem that feels very much like she’s trying to sell the reader on Down syndrome and why people with Down syndrome are great.  I don’t want to qualify Finn to anyone, and I very much shy away from doing so.  I’d like instead to foster acceptance of everyone by everyone merely for our shared humanity.

Thumbs down on this one.

61efFfCjfdLTaking Down Syndrome to School (Special Kids in School)

by Jenna Glatzer

Aimed at ages 4 and up, this one felt promising by its title, but ended up being a disappointment.  We find out on the second page that Nick, the main character, a boy who has Down syndrome, goes to a regular public school with “all sorts of kids” rather than a “special school.”  Yay, right?  Wrong.  We find out later that although he goes to public school, he’s in a special ed class.  Now, I know that there are plenty of parents out there whose kids with Ds are in special ed classrooms either part- or full-time rather than fully included in general ed, and I’m not going to go into the whys and wherefores of that here, because that’s a whole other blog post.  But in a nutshell, this book is NOT pro-inclusion, and it’s kind of subtle about not being pro-inclusion because it sort of seems like it’s trying to appear to be pro-inclusion, but it’s just really not.  So if you happen to be a parent who is pro-inclusion, this probably isn’t a book that would be your cup of tea – it wasn’t mine.

Further, it’s ableist, as well.  “Not all kids with DS are the same.  Some of them have more trouble learning than I do.  I am lucky because I am learning handwriting and math.  Some kids with DS can’t do that.”  The message I get – and that young children would surely get – is that ability = value.  So, it’s really sad that some kids can’t do handwriting and math, and they are to be pitied.  Right?

Even some of the “Tips for Teachers” in the back of the book are problematic.  For instance, in a paragraph about using People First Language, the author advises, “Remember, it’s not a ‘Down syndrome boy,’ but rather, a boy living with Down syndrome.” Living with?  How about just with?  The “living with” is just not a far leap at all from “suffering from” or “afflicted by.”

Anyway, I just really didn’t care for this book.

51ONebSQKHL._SX258_BO1,204,203,200_My Friend Has Down Syndrome (Let’s Talk About It Series)

by Jennifer Moore-Mallinos

Out of the three, this one is the most promising.  It’s very down-to-earth and compassionate without being sappy or condescending.  It’s narrated by an eight-year old typically developing girl who tells about going to summer camp.  One day, a new camper arrives, and she has Down syndrome.  The kids are a little wary of her at first, but quickly figure out that above all, she’s a kid who wants to fit in, make friends, and have fun just like the rest of them.  This book, I feel, presents differences without being divisive, and definitely presents inclusion in a very positive light.

Although it’s aimed at ages 4 – 8, I feel like it’s probably best suited for second- and third-graders, so I’m not sure about reading it in Finn’s first-grade class.  I may just suck one more reading out of My Friend Isabelle – I’m not sure yet.  Still, I’m hanging on to this one for future use for sure.

Writing With Grace by Judy McFarlane

20763909 Writing with Grace: A Journey Beyond Down Syndrome

by Judy McFarlane

In 2006, Judy McFarlane, an aspiring writer herself, was asked by a friend if she would help a young woman with Down syndrome write a book.  “I always dream to be a famous writer,” twenty-three year old Grace Chen had written in her notebook.

When Grace was born in Taiwan and the family learned that she had Down syndrome, Grace’s grandfather advised Grace’s parents to put her away in an institution and forget about her.  Instead, Grace’s father said to his wife, “Now we have to think how to help this child.”  Eventually, they decided to emigrate to Canada to make a new life for themselves.

When McFarlane is introduced to Grace, she has big reservations.  She’s always had aspirations to write herself, but instead pursued a career as a lawyer, and then stopped working to raise three children born in quick succession.  Now her children were grown, and that old desire to write – to be a writer – was pulling at her again.  Unsure of her own abilities as a writer, she was ambivalent about helping someone else write.  But her reservations went deeper than that, and that is what underpins this story.  It’s the story of how Judy McFarlane, middle-aged former attorney, aspiring but unsure writer, spent several months helping a young woman with Down syndrome write a book.  More than that, though, it’s a pretty courageous and unflinching look at her own prejudices, fears, and preconceived ideas about Down syndrome and disability, and that’s what makes this book unique in the Down syndrome literary landscape: the perspective from which the story arises and is told.  It’s not so much the story about a young woman with Down syndrome, but one about an older, educated, accomplished woman who confronts head on her own feelings and ideas about disability and Down syndrome.

Over the months of sitting down with Grace to help her write her book, McFarlane develops a growing fondnessOLYMPUS DIGITAL CAMERA for Grace that doesn’t feel condescending, as well as a friendship with Grace’s parents.  Her growing interest in learning more about Down syndrome leads her to meet and talk to other adults with Down syndrome and their families.  She also confronts memories of a girl from her childhood who had Down syndrome and was bullied while young McFarlane stood by.

I really enjoyed this book, and I think its unique perspective, thorough research, and engaging writing make it an important addition to anyone’s Down syndrome/disability book shelf.

For a look at Grace’s book – a modern take on the traditional Cinderella story, check it out on Amazon: Cinderella-Grace Vancouver Princess

The Memory Keeper’s Daughter by Kim Edwards

Memory_Keepers_Daughter The Memory Keeper’s Daughter: A Novel

by Kim Edwards

It’s hard to believe that this novel was originally published ten years ago already.  The first time I read it was in 2006 or 2007 – I can’t remember which, but I was pregnant at the time with my sixth baby who, unbeknownst to me at the time, would be born in the summer of 2008 with Down syndrome.  I’ve wanted to reread it ever since Finn was born, wondering how my take on the story might be changed by my own personal experiences.

The Memory Keeper’s Daughter, which has become somewhat of a staple on the bookshelves of parents of children with Down syndrome, is a profound story of loss and regret.  The story centers around a lie, one told with the best of intentions, but which reverberates through the years in ways never imagined by the person who utters the lie.

The story opens as snow begins to fall on a March evening in 1964 in Lexington, Kentucky.  Norah Henry, only twenty-two and still a newlywed, young, beautiful, and trusting, goes into labor three weeks early on this night.  It is her first child with her handsome doctor husband, David.  As the young couple realizes that their baby is determined to be born this night, the falling snow grows into a full-fledged storm, and they make their way across town on treacherous roads to the clinic at which David works, knowing they won’t make it to the hospital in this weather.  When they reach the clinic, David’s nurse is waiting, and she delivers the startling news that the doctor who was supposed to meet them there to deliver the baby went off the road into a ditch in the storm.  David must deliver his own child.

The birth goes smoothly, with the nurse administering gas to Norah through the worst of it, which renders her mostly unaware of the events unfolding at the foot of the delivery table.  A healthy boy.  But then, David realizes that there is another baby, and soon that baby also slips out into his hands.  They didn’t even know that they were expecting twins.  David immediately recognizes that the second baby, a girl, has Down syndrome.  He makes a split-second decision that will set in motion a future he cannot foresee in that moment: as his wife lies on the table unconscious, he hands the baby girl to the nurse and instructs her to take the infant to a home for the feeble-minded.  When his wife regains consciousness, he utters the lie that forms the basis for the rest of the story: he tells his wife that she gave birth to twins, but that the second baby died before drawing her first breath.

Now, I have trouble with this part, because no matter how I turn it over in my mind, I can’t understand why he even bothered telling his wife that she gave birth to a second baby.  She was essentially unconscious during the birth and had no memory of it; it seems that he only complicated matters by telling her about the second baby at all.  However, this is a story, and this lie was necessary in order for the rest of the story to happen.

So.  Norah grieves for this daughter she neither knew she was carrying, nor ever saw or held.  I don’t doubt that there would nevertheless be a profound grief, but it would seem that it would be based largely in shock at finding out one gave birth to a baby one didn’t even know one was carrying.  But, I digress.

Caroline, the nurse to whom David handed his newborn daughter with instructions to take her away, does go to the institution with the infant, Phoebe, and finds it to be a terrible place.  She can’t bring herself to leave the baby there, and impulsively leaves the home and takes the baby with her.  Not knowing exactly what she’ll do, she takes the baby home with vague some expectation that David will come to his senses and do the right thing and claim the baby.  However, when she sees a notice in the paper a few days later announcing a memorial service for Phoebe Henry, stillborn daughter of Dr. David Henry and his wife Norah, she understands what David has done, and she leaves town with Phoebe to start a new life elsewhere, raising Phoebe as her own.

The novel spans a quarter of a century, alternating between the Henry family’s lives in Lexington, and Caroline’s life with Phoebe in Pittsburgh.  After the death of their daughter, Norah never fully recovers; her daughter’s absence is a void inside her, and she draws more and more into herself as David, coping with guilt and regret, builds an invisible wall of distance between himself and not only his wife, but his son Paul, as well.  Paul grows up feeling the distance between his parents and the hole left by his dead twin sister, and tries to bury his rage in music.  The anguish in this family is palpable.

Meanwhile, miles away, Phoebe grows up with the only mother she knows, Caroline.  Fortunate to be free of most of the health problems associated with Down syndrome, Phoebe is healthy and well-loved.  Caroline fights for Phoebe to go to school and receive an education, and she willingly sacrifices her career and dreams, as mothers do, for her child.

Predictably, Norah eventually learns the truth: that her husband lied to her, that their daughter never really died, that she’s alive and well and living in Pittsburgh with Caroline Gill, the nurse who helped deliver her babies all those years ago.

Luminous and deeply affecting, Edwards spins this story with almost dreamlike prose.  The characters are so richly and vividly drawn, their feelings and thoughts so well revealed – it all just felt so real.  Parts of it I questioned, like David telling his wife about the second baby in the first place.  I also thought that when Norah does finally learn of her daughter’s existence, she doesn’t seem shocked or troubled at all to find out that she was born with Down syndrome – and I thought that unrealistic.  Although finding out a child you thought was dead is not actually dead would certainly trump finding out that child had Down syndrome, I still think that the Down syndrome piece would nevertheless be something to grapple with and come to terms with.

I appreciated that Edwards did not conjure up an ending that was neatly wrapped up.  There really is no happily ever after.  Once Norah and her son Paul learn of Phoebe’s existence, they try to forge a relationship with her, but it’s clearly fraught with awkwardness and uncertainty.  Edwards did a fabulous job, I thought, too, of portraying a person with Down syndrome and attitudes about Down syndrome and intellectual disability in line with the time periods of the story.

The tendency for those who read The Memory Keeper’s Daughter, I think, is to rail against David Henry, not only for lying to his wife, but for giving his daughter away at all.  The tendency, I think, is to believe that if only he hadn’t handed the baby over to Caroline and instructed her to take the baby away, all of this anguish and heartache would have been avoided.  One only need read Theresa Shea’s The Unfinished Child, however, to realize that the harsh truth is that chances are almost certain that Norah would have also sent her baby away had she known of its live birth and chromosomal makeup.  That’s generally what was done up until only twenty or thirty years ago.  Shea paints a stark and utterly realistic picture of what generally happened when women gave birth to babies with Down syndrome back then: they sent them to institutions because they were advised to and because there really were no resources available to parents who actually wanted to raise their disabled children at home – and then they mourned them forevermore.  There were very few happy endings in those days; although Caroline throws convention to the wind and raises Phoebe herself, and does it well, she does it at great cost to herself and against great odds.

The Unfinished Child then brings us to the present day, and shows us how Down syndrome is viewed today; we have more choices now, but those choices have their own consequences.

I think The Memory Keeper’s Daughter and The Unfinished Child complement each other extremely well; if you read one, read the other.  They’re both excellent, illuminating stories.

The North Side of Down by Nancy Bailey and Amanda Bailey

Unknown The North Side of Down: A True Story of Two Sisters

by Nancy Bailey and Amanda Bailey

Memoirs written by parents about raising children with Down syndrome are not hard to come by.  This memoir offers a unique perspective, as it’s written by a sibling rather than a parent, and it centers around an adult with Down syndrome rather than the usual stories about babies and kids with Down syndrome.

At the heart of the story is the relationship between two sisters: Nancy and Amanda.  Amanda, a forty-year old woman with Down syndrome, is the youngest of eight children.  Among the siblings, she is closest to Nancy, eight years her senior.  From the time Amanda was brought home from the hospital with the announcement from their father, “Your new sister is a Mongoloid,” Nancy has doted on Amanda.  By  the time Amanda is in grade school, most of the other siblings have left home, and their mother, suffering from chronic depression, casts Nancy in the role of Amanda’s main caregiver and playmate.

The North Side of Down covers a period of a couple of (recent) years when all of the siblings are adults, and their aging parents suffer severe medical setbacks that necessitate the adult children to step in.  First their mother dies, and within a couple of years their father, Amanda’s legal guardian, also dies.  In the midst of heart wrenching grief, old wounds between the siblings are brought to the surface, battle lines are drawn, and a custody battle over Amanda ensues.  Sadly, fighting over custody of this intelligent, funny, sarcastic woman with an intellectual disability and health issues of her own appears to have less to do with love than with power struggles within a very dysfunctional family.  In many ways Nancy would seem to be the best choice for Amanda’s guardian – they have the closest relationship, and more than the other siblings, Nancy seems to understand Amanda and have her best interests at heart.  Unfortunately, Nancy is in the midst of bankruptcy and, as a dog trainer and struggling artist, doesn’t have the financial means to be Amanda’s guardian, so she must pit herself against her family and try to fight for the best achievable arrangement for Amanda.

While this memoir doesn’t center around Down syndrome, it does offer insight into what can happen in a family when guardianship issues concerning an adult with disabilities are not properly dealt with before it’s too late.  It also offers insight into the dynamics of a severely dysfunctional family, which, sadly, too many of us can relate to.

This is a self-published book, and I would love to see it get picked up by a publisher.  Although it would benefit from professional editing, Nancy is a talented writer, and Amanda’s contributions bring the story more to life.  A story with real heart; I definitely recommend it.

Know the Night by Maria Mutch

[Originally posted on June 9, 2014 here]

6a017ee3e1169b970d019b01ad2318970d-300wi Know the Night: A Memoir of Survival in the Small Hours
by Maria Mutch

This debut memoir is Mutch’s account of a two-year period during which her oldest son Gabriel, from age eleven to thirteen, didn’t sleep much, and as a result, neither did she.

This book stands apart from other parental memoirs of disability on many fronts. Far from being a hand-wringing rant, or even a tale of coming to terms, Know the Night is deeply contemplative, and reading it felt a little like being allowed into a quiet, private chamber. During the chronic night wakings, as she staggered through days of mind-numbing sleep deprivation, Mutch became intimately acquainted not only with her son, but with the night itself, in all it’s vastness and mystery.

“I tend to think that if he spoke, the night, too, would be different. The spell broken. Night would seem cold and clean and beautiful again. I have stood on the lawn in November wearing five layers of clothes to watch the Leonid meteor showers, or bathe my face in moonlight, or simply to see how immense the sky is and experience that twinge of becoming tiny in its indifferent embrace as it twirls unstoppably. I’ve witnessed aurora borealis, too, when I was twenty-one and floating at night on an Ontario lake in a small rowboat. I slipped over the side to swim in black water, drifted on my back, the dark rim of pines seeming very close. Above me drifted the smudged galaxy, and Leo, Hercules, and Cassiopeia. I floated there, felt myself being erased in the lake’s black ink. And there it was, a brilliant green rolling over the Earth’s magnetic arc, one stream after another. And along with it, a physical presence, a silence, enveloping and dark and honed.”

Born with Down syndrome and later diagnosed with autism, Gabriel began developing a vocabulary as a toddler, but had lost all of his speech by the age of six. During those sleepless nights, Mutch pondered Gabriel’s absence of speech and discovered that there are many languages that are not verbally spoken, that communication comes in surprising forms, including silence, which she observes not only in her son, but in the story of Thelonious Monk being detained by police in the 1950s, and in the frozen desolation of Antarctica.

Jazz and the Antarctic both play major roles in Mutch’s memoir. Jazz is a refuge for Gabriel, and a language he understands and loses himself in. Mutch, clearly a knowledgeable fan herself, plays jazz for Gabriel at home, and they are such regulars at local jazz clubs that several of Gabe’s birthday parties are held in one or another.

Interspersed with Mutch’s recollections of their sleepless nights and her contemplation of jazz is also the story of Admiral Richard Byrd‘s expedition to Antarctica in the 1930s. Mutch read Byrd’s account of his expedition, which included five months of utter solitude living in a hut and barely escaping with his life, during the period of Gabriel’s sleeplessness. Byrd’s isolation and harrowing polar survival struck a chord with Mutch as she navigated nights of isolation and harrowing survival of a different kind; it’s an interesting parallel and juxtaposition.

In the end, this memoir lacks the usual heart wrenching, tear-jerking, and even soapbox-stomping which makes it stand apart. Although there is a patina of melancholy, her telling of “survival in the small hours” during Gabriel’s prolonged period of wakefulness reads like a meditative odyssey in search of a deeper understanding of her son.

Her prose is gorgeous and begs to be savored. As I read, I folded down the corners of many pages because there were so many passages I wanted to reread just to let the words roll over me.

Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion by Sandra Assimotos McElwee

[Originally posted on April 21, 2014 here]

Unknown Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion
by Sandra Assimotos McElwee

Unlike the countless other memoirs written and published about raising a child with Down syndrome – woman gives birth; woman learns baby has Down syndrome; woman weeps, rails, and wrings hands; woman discovers acceptance and joy in having a child with Down syndrome (I’m not poking fun – this is very much my own story) – Who’s the Slow Learner is a chronicle of the author’s son’s schooling from preschool through high school graduation. This is a sorely needed book in the landscape of disability and education.

Sandra McElwee recounts her determination to see her son Sean, an only child, fully included in general education classrooms. A tenacious advocate, McElwee found what a lot of us parents are finding: that inclusion is much easier to accomplish in elementary school than it is in junior high and high school. From kindergarten through sixth grade, Sean was accepted in his neighborhood public school, and battles for inclusion on his behalf were minimal. The benefits of inclusion were clear: self-esteem, peer modeling, a sense of community and belonging, and far more learning opportunities for Sean, and lessons in compassion, tolerance, and embracing diversity for the other kids and the teachers.

Once Sean entered seventh grade, however, it all changed. He entered a hostile environment of blatant prejudice and exclusion. It took such a toll on Sean’s behavior and self-esteem that his mother finagled for him to skip eighth grade just so he wouldn’t have to return to such an unwelcoming atmosphere for a second year. In high school Sean slowly found his footing and flourished in making a place for himself in the social structure of high school, but acceptance by the teaching staff was still largely difficult and often hostile.

I read this book with great interest in anticipation of my own son’s IEP meeting that would determine his kindergarten placement for the upcoming school year. We’ve already had such terrible battles with our school district concerning our son who has Down syndrome – it’s been emotionally and financially draining, to say the least. I was especially interested because the McElwees are fairly local to me, although not in the same school district, so I thought it would give me a pretty good glimpse of what the future might hold for us regarding Finn’s schooling.

Like I said, this book is different from all the other personal stories of Down syndrome out there, and it fills a gap in the Down syndrome/disability literary landscape that has very much needed filling.

However.

My only criticism – and it’s a big one – is that the writing is very much in need of professional editing. This is a self-published book, and unfortunately, it shows. There are too many inspirational quotes (and too many faith-based passages which tend to alienate readers who don’t share the same beliefs), too many typos, not enough formatting, and not enough polish. It really needs a professional hand – especially for the price (ten bucks for Kindle and eighteen bucks for paperback). I think this book fills such a needed space, but would have so much more impact – on parents and educators – with a major editorial overhaul.

Where the Moon Isn’t by Nathan Filer

[Originally posted on October 7, 2013 here]

UnknownWhere the Moon Isn’t: A Novel
by Nathan Filer

I’ve been meaning to mention that Book Browse is a neat little site where you can read book reviews and keep track of your own reading list, if you’re so inclined. You can get limited access to the site for free, and for a $30/year membership fee you get access the entire site, which is actually pretty extensive, and includes a monthly newsletter with reviews, online book clubs/discussions, author interviews, and more. You also get access to the site’s feature, “First Impressions,” which is a program whereby they offer a limited number of advance copies of soon-to-be-released books for free (well, it’s included in the $30/yearly fee) in exchange for your agreement to read and write a short review on the site. I’ve received quite a few free advance copies of books this way.

So, recently, Where the Moon Isn’t was one of the books offered by Book Browse First Impressions. The description of a novel about two young boys who sneak out one night, but only one of them returns, intrigued me, so I requested and received it to read and review.

From the moment I opened this book, I could hardly put it down.

Matthew and Simon Homes are no ordinary boys. It is gradually revealed that Simon, the older of the two brothers, has Down syndrome. I had no idea when I requested this book that it featured a character with Down syndrome. The way it’s revealed is both matter-of-factly, but almost incidentally. As I began to realize that Simon had Down syndrome – before “Down syndrome” was ever uttered – I got chills as I recognized pieces of my own son, Finn, in him.

The younger of the two brothers, Matthew, narrates the story. It was his 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 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.

Told alternatingly between moments of lucidity and madness, this story is like no other story I’ve read. It’s both unflinching and compassionate, heartbreaking and funny, tender and tragic. My eyes burned from reading so late into the night (one night by lantern during a power outage), and by the end, I was laughing and crying.

I was so moved by this story – and it’s a debut novel. This guy can write! I won’t soon forget Matthew and Simon Homes.

This book will be released next month; put it on your wish list.

Note: this book is also sold under the tile The Shock of the Fall.

Sun Shine Down by Gillian Marchenko

[Originally posted on September 5, 2013 here]

Sun-Shine-Down-Cover-250-px Sun Shine Down: A Memoir
by Gillian Marchenko

“I know of other mothers who have children with disabilities, and right away they loved them and decided to fight for them. that isn’t my story.”

In this slim little gem of a memoir, Gillian Marchenko recounts the birth of her third daughter by emergency c-section in Ukraine – far away from her family in her native Michigan. Soon after her daughter’s traumatic birth, Gillian and her husband learn that not only is their new baby very ill, she also has Down syndrome – and this in a country where babies with Down syndrome are still routinely institutionalized from birth.

After leaving their missionary work in Ukraine and moving back to the states, Gillian struggles to come to terms with Polly’s diagnosis. Weighed down by depression, she turns to alcohol for escape and solace, all the while trying to keep up appearances as a good mother, and a pastor’s wife.

Stark and beautiful in its honesty, this is a very human story of a mother struggling to cope with a new reality, and ultimately of a baby who lights the way.

I’ve read a lot of Down syndrome memoirs, and this jewel rises to the top as one of the better ones.

The Unfinished Child by Theresa Shea

[Originally posted on April 3, 2013 here]

Image.ashx The Unfinished Child
by Theresa Shea

Gripping. Heart-wrenching. Thought-provoking. Riveting. Haunting. Unputdownable.

Those are just a few words that come to mind to describe this just-released novel by Canadian writer, Theresa Shea.

At the heart of the story are three women: Marie, Elizabeth, and Margaret.

In 1947, Margaret gives birth to her first baby, a girl, whom she names Carolyn. She is allowed to hold her baby once, and even that is against her doctor’s advice. Born with Down syndrome at a time when institutionalization of “mongoloids” and “mental defectives” was the norm, something within Margaret dies, nonetheless, at handing her baby over. As was also the norm then, the whole incident is brushed under the rug, and Margaret is expected to forget her first child ever existed, and move on. Move on, she does, having two “healthy” children in quick succession, but Margaret never fully recovers in her heart from Carolyn’s birth and absence. When Carolyn is four years old, Margaret summons up the courage to visit her in the “training centre” in which she is housed, and there begins twelve years of monthly visits from mother to daughter, all undertaken in secret.

Marie and Elizabeth are best friends in modern-day Canada. They’ve been best friends since they were girls, and their friendship has withstood not only the test of time, but of boyfriend stealing, and barely, the fact that Marie has two beautiful daughters and Elizabeth has never been able to have children despite a decade of grueling fertility treatments. Now, on the brink of turning 40, Marie finds herself unexpectedly pregnant again, and the news not only throws her for a loop, but opens up old wounds between her and Elizabeth. One night, Marie wakes from a dream, convinced that something is wrong with the baby she carries – the baby she never planned. Both her premonition and the fact of her “advanced maternal age” lead her down the path of prenatal testing, and suddenly it seems as though it’s not only her and her baby’s fate that lie in the crosshairs, but her husband’s, her existing children’s, and even her best friend’s fates as well.

How the stories of these three women from different eras intertwines will surprise you. Shea takes an unflinching look at the grim horrors of institutionalization, the nuanced dances that take place between spouses and friends, and the price we pay for having choices.

I broke down in tears many times throughout this deftly imagined story, and although I wanted to be able to summon up some righteous outrage at times, what I mostly felt was enlightened and a deep compassion. It drives home the fact that despite the debates raging about prenatal testing, abortion, and inclusion, nothing is black and white, and there are no easy answers.

This is a must read for not only parents in the Down syndrome community, but for all parents, and for anyone who appreciates masterful story-telling. I will not soon forget this book.