Supporting Positive Behavior in Children and Teens with Down Syndrome by David Stein, Psy.D.

51tfcynwrslSupporting Positive Behavior in Children and Teens with Down Syndrome

by David Stein, Psy.D.

I came across this book purely by chance when I saw a friend post a photo of it on Instagram. The title struck me, and I immediately ordered a copy from Amazon.

I’ll start by saying that we have dealt with behavior issues with Finn, our 8-year old son with Ds, for a long time.

Read my review in its entirety here.

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 …

Read the rest here.

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 . . .

Read more here.

Know the Night by Maria Mutch

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

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

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.

Sun Shine Down by Gillian Marchenko

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

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.

Far From the Tree by Andrew Solomon

far-from-the-tree-cover-223x339 Far From the Tree: Parents, Children and the Search for Identity
by Andrew Solomon

Where to start?

I was eager to devour this tome (702 pages, not including Acknowledgments, Notes, Bibliography, and Index) when it started generating buzz in the Down syndrome parenting community a couple of months ago.  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.

I was, of course, especially interested in the chapter on Down syndrome, and I wrote about it here: On Down Syndrome and Falling Far From the Tree.  I won’t rehash what I had to say about except to say that it stirred up very mixed feelings for me.  Here are a couple of other reviews by parents of children with Down syndrome, if you’re interested: Far From the Tree – I Finally Finished It by Alison Piepmeier; and “Far From the Tree” Review: Families On the Edge by George Estreich.  The consensus seems to be that, while Solomon covers important ground on Down syndrome, he missed the boat on quite a bit.

And I wonder if the same can be said about any of his other subjects in the book.  Overall, the book is sad and bleak.  I read the chapter on Autism, for instance, with great interest, as I have a number of friends who have children who have been diagnosed with autism.  To be perfectly frank, Solomon’s portrayal of autism is pretty horrifying, despite the fact that he wants to get the message across that these parents experience a love for their children that is at least, if not more, profound than parents of neurotypical children.  I was left wondering, “Is this really how life looks behind closed doors for these people I know who have kids with autism?”  Even more so, I wondered – and am still wondering – what those people I know would have to say about Solomon’s treatment of autism – would they dispute the picture he paints as we parents of kids with Ds have disputed his picture of Down syndrome?

In Cristina Nehring’s article, Loving a Child On the Fringe, in which she takes on Solomon’s book, and specifically his take on Down syndrome as the parent of a child with Ds herself, she lashes out at him for, in the end, seeking an “A-1” baby for himself, and for wrongly seeing himself as an “adversity survivor” when his child is born and needs a CAT-scan to investigate some apparent physical anomalies.  I read Nehring’s article before I read Solomon’s book.  Having now read the book, I think Nehring exaggerated; although Solomon and his husband do go through the usual process of sifting through donor profiles once they’ve decided to have a child via egg donor and surrogate; in the end, they abandon that and conceive a child with a close friend, and they forego amniocentesis that would detect birth defects.  When their newborn requires a CAT scan, Solomon describes the terror any new parent would feel at being told that their brand new baby may have something seriously wrong with it.  In that brief span of time between being told that, watching his newborn son undergo the scan, and finally being told that all was well, Solomon discovered in himself what most of we parents who have children with unexpected conditions discover: that our love for those children prevails over terror.

All that said, however, I’m still at sort of a loss about this book.  I wonder what the real point of it is: if the point is to engender tolerance and compassion for diversity, I think Solomon paints too bleak a picture of most of his subjects to accomplish that.  And who, exactly, is this book’s intended audience?  If it’s for the general public, I think in large part it will only serve to reinforce the societal feeling that difference is scary and unpleasant.  If it’s meant for the families of children with “horizontal identities,” I think, unfortunately, Solomon falls short of the mark despite his extensive research.