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.

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The Anti-Romantic Child by Priscilla Gilman

[Originally posted on March 18, 2014 here]

9780061690273 The Anti-Romantic Child: A Story of Unexpected Joy
by Priscilla Gilman

Where to start?

I honestly can’t decide if I loved this book or disliked it. I suppose both.

In this memoir, Gilman tells of her idyllic childhood and the pain that was wrought by her parents’ split when she was ten. Always a pleaser, she spent much of the next couple of decades trying to fulfill the wishes and expectations placed on her by her family and teachers, pursuing a life of academia. Through it all, she pines for the romanticized version of her early childhood and longs to replicate it with children of her own.

When her first child is born, he is different from what she had expected from the beginning: he is “floppy” and not the cuddly child she had envisioned. In fact, he resists most forms of physical contact and in many ways appears an island. As Benj progresses into toddlerhood, he remains distant, he is clumsy and slow to meet gross motor milestones, and is plagued by inexplicable anxieties and tics. At the same time, he begins reading fluently by age two and shows a remarkable capacity for memorization, and an obsession with letters, numbers, and lining up and ordering things.

“Part of what made my dawning realizations about Benj so disconcerting and devastating was that I had thought I knew him so well. After the initial sense of alienation and despite my continued sense of a fundamental difference or distance between us, Benj, with all his quirks, had become utterly familiar to me. There had been no one more familiar to me than my son. I had considered myself totally tuned in to his needs and had accepted him on his own terms. In fact, I had embraced him for what he was, because I still wanted to be the devoted mother of the romantic child I’d imagined; even if (or especially because) the child didn’t match the ideal, my love for him would. But now I wondered: was this acceptance instead based on a ‘fond illusion of my heart’ (Wordsworth, ‘Peele Castle’)? Was it a kind of denial, a refusal to help or even accurately perceive him? To question your grasp of your child is to suffer a great loss.”

Every aspect of Gilman’s life is informed by the poetry of William Wordsworth, of which she is both a student and a professor, and her book is liberally peppered with Wordsworth poetry that acted as both knife and balm to her mother’s heart.

Around the age of two and a half, Benj’s issues become troubling enough that Gilman decides to begin the process of having him evaluated. Certain aspects of her story resonated so strongly with me with regard to my own child who has Down syndrome:

“Now, with the outside world’s judgments and prescriptions infecting our family, with the knowledge that we would have to have him formally evaluated in clinical settings, our peaceful happy private life, a life in which we – not teachers or doctors or therapists – defined his value and his identity, was gone. Benj was still his same sweet self, but my entire sense of him, of our family, of his and our future had changed.”

I could very much relate to that feeling of loss relating to allowing the sterile, clinical world intrude on our family to assess our child and break him down into scores and numbers and deficiencies.

Benj is diagnosed with hyperlexia (which is like the opposite of dyslexia) and a myriad of delays, sensory issues, and obsessive-compulsivity, and so begins his entrance into special schooling and intensive therapies. Indeed, nearly their entire lives seem to be taken up with various therapies for young Benj. Meanwhile, Gilman leaves academia behind and her fairy-tale marriage breaks up, due in large part to a polarization in her and her husband’s feelings about their son’s issues.

Gilman’s prose is beautiful and from the heart; she is a gifted writer and tells her story vividly. I think what I found frustrating – as a parent of a child with special needs myself – was what I perceive as a juxtaposition, or maybe just waffling, between Gilman’s determination to accept her son and value him exactly as he is, rejecting notions of achievement-based valuing of human beings, and a strong sense of ableism and very much wanting to normalize Benj as much as possible, by relentlessly plunging him into therapy after therapy aimed at changing him. Perhaps, however, her summing up of her feelings explains it best:

“Wordsworth has strengthened my commitment to simultaneously helping Benj integrate into society and honoring his differences. Our therapeutic efforts have been, of course, designed to help Benj be more ‘romantic’: more spontaneous, imaginative, intrepid, playful, connected to others. But even while striving so hard to help Benj become more romantic, I always wanted to remember that Benj’s antiromantic traits are valuable and wonderful and an essential part of who he is. They are strengths and gifts. I never want them denigrated or dismissed as ‘splinter skills.’ Both my reading of Wordsworth and my experience with Benj have taught me the danger of the very idea of ‘normalcy.’ I will always resist mightily any orientation or approach that sees Benj as a problem or somehow ‘broken’ rather than as simply and profoundly himself.”

It was perplexing to me that her son never received a formal diagnosis; so much of what she describes seems like autism, but that may admittedly be my own misconceptions and assumptions. I wondered if it was a form of denial on her part, or a manifestation of the ableism I perceived in her. And yet, she explains very eloquently,

“Despite numerous evaluations over the past seven years by developmental pediatricians, psychologists, speech and language therapists, occupational therapists, and psychiatrists, Benj has never received an official label or diagnosis. He clearly has shades of obsessive-compulsive disorder, and could be grouped under the headings of sensory-integration disorder and social-pragmatic language disorder; now, as he gets older, I often describe him as ‘borderline Asperger’s,’ usually as a kind of shorthand when I need to succinctly explain why he’s in a special school. I’ve always been ambivalent about the idea of labels. They’re undeniably useful for securing the much-needed therapies and special services, but I’ve often wondered how a label would be helpful in understanding Benj. Would a label make people more sympathetic to him? Or would it get in the way of appreciating the complex, intricate person Benj is? How much detail, nuance, subtlety do we lose when we slap labels on people, and especially on still-developing kids? Reducing Benj to a label would me the loss of mystery, romance, respect for the idea of identity as something that can never be precisely defined of fully known or mastered.”

But there are children like my own who are born with a recognizable, inescapable diagnosis or label; and so, while I fully appreciate Gilman’s hesitancy at using labels, I can’t help but also recoil a bit at her feeling that labels are reductive. In reality, sometimes they can’t be avoided, for all of their pitfalls.

This is a very different sort of memoir that I’ve read before, generally and pertaining to having a child with special needs, in large part because it is so heavily informed by the author’s passion for literature. Despite my misgivings, it has definitely given me pause to consider how other parents approach disability.

Three Generations, No Imbeciles by Paul A. Lombardo

[Originally posted on December 29, 2013 here]

Three-Generations-No-Imbeciles-Lombardo-Paul-A-9780801890109Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell

by Paul A. Lombardo

The United States has a long history of shameful behavior behind the legacy of patriotic heroism, bravery, innovation, and resilience. Our forefathers stole land from the natives who were here before us, spread disease, enslaved hundreds of thousands of people, and well into modern times have continued to marginalize and mistreat minorities. One of the chapters in U.S. History that is not taught in school is the eugenics movement which took hold in the early twentieth century.

Eugenics – or “better breeding” – was a social movement rooted in quasi-scientific theories about heredity. It was believed – though never actually proven by any stringent scientific methods – that individuals with undesirable traits, including, most notably, epilepsy, alcoholism, “pauperism,” (those living in poverty), criminal tendencies, and “feeblemindedness” were born with those traits by way of genetics, and that they would pass those traits onto their offspring. The only way to prevent the world being overrun by these “lesser breeds” was to prevent them from reproducing via forced sterilization.

“Anxiety about those who failed in the contest of life, relying on charity and inflating the taxes of everyone else, was widespread.”

(Things haven’t changed much, have they? Just listen to anyone in today’s Republican party and you’ll hear much the same.)

“Degeneracy theory gave a human face to the biblical curse condemning children to inherit the sins of their fathers.”

Forced sterilizations – the vast majority of which were performed on women – began in the late nineteenth century on people institutionalized, either in prisons or in mental hospitals. In order to give it legal clout in the face of public disapproval, a test case was chosen in 1923 to go all the way to the U.S. Supreme Court. The case was Buck v. Bell, and the plaintiff was Carrie Buck, a young unwed mother who was deemed “feebleminded,” as was her own mother who resided in a state institution, and her infant daughter.

“Feeblemindedness” was a very vague term, encompassing a vast array of “conditions,” including, but not limited to illiteracy, low IQ (determined by very unsophisticated and untested tests), wanderlust, immoral behavior (like becoming pregnant out of wedlock – nevermind that Carrie Buck became pregnant as a result of being raped by her foster parents’ nephew), and “shiftlessness.” Upon learning that Carrie was pregnant, her foster parents did what many did in those days to distance themselves from the shame of an unwed pregnancy in the household: they had her sent away and committed. Torn away from her baby only a couple of months after giving birth, Carrie was committed to the same institution where her natural mother resided – for reasons unknown – and both they and the infant girl were deemed “feebleminded.” Carrie’s surgical sterilization was planned to take place on the heels of her case which would go to the Supreme Court, which the doctors and lawyers orchestrating had every intention of winning – to the point of assigning an attorney to represent Carrie who did nothing to defend her rights and merely bolstered the State’s sham of a case.

In the famous Supreme Court decision, Justice Oliver Wendell Holmes, Jr. wrote,

“It is better for all the world if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind . . . Three generations of imbeciles is enough.”

Carrie Buck was in fact forcibly surgically sterilized after the case was decided, as was her thirteen-year old younger sister, and thousands upon thousands of more people over the next several decades, with California leading in the number of sterilizations performed. Carrie was eventually released from state custody and lived to be an old woman, dying in 1983, having been married twice and living most of her life in abject poverty. People who knew her later in life scoffed at the notion that she was “feebleminded.” She was, in fact, of average intelligence. The daughter she gave birth to illegitimately was adopted by Carrie’s foster parents and died of an illness at the age of eight or nine, after doing well enough in school, both academically and in her “deportment,” despite having been deemed “feebleminded” as an infant.

The U.S. eugenics movement fueled Nazi Germany’s quest for racial cleansing,

“But neither scientists nor the public connected U.S. laws to German atrocities. Fifty years after Buck, more than a dozen compulsory sterilization laws were still in force, and surgeries were documented in institutions as late as 1979. Far from being a legal dead letter, Buck has never been overturned.”

German scientists actually worked closely with American scientists in the development of their own eugenics movement, which of course was the foundation for the Holocaust. At the Nuremberg trials, Buck was referred to again and again in defense of the Nazi’s genocide.

It is hard to imagine in this day and age people being forcibly surgically sterilized for any of the reasons that were seen as completely justified and reasonable back in the day. And yet, despite astronomical leaps in scientific knowledge and supposedly progressive social views, minorities, people living in poverty, and people with disabilities are still marginalized and even targeted for elimination now. Knowing the history of eugenics in the U.S., it is impossible not to believe that modern-day prenatal screenings, designed specifically to target and weed out certain disabilities, is tied to eugenics.

“In the shadow of the Holocaust and in the light of Carrie Buck’s saga, eugenics is now almost universally considered a dirty word. But many of our motives today are no different from those of the Buck era: we continue to hope that science can be used to improve the human condition. We all want to eradicate disease; we all hope to have healthy children. We all also want lower taxes. Whether or not we use the word eugenics to describe those motives, we must recognize their power, both in historical context as well as today.”

“Today we can diagnose some forms of deafness, blindness, and cancer as well as numerous other diseases, where we know the genes that lead to disease and we can reliably predict its onset. The search for the cause of mental retardation has not abated since the time of Buck, and many genetic markers for cognitive impairments remain under study. How much does it matter if we use a technique – less troubling to some than coercive surgery – to “cleanse the germ plasm,” as the eugenicists would have said? Does our embrace of techniques such as preimplantation selection of “normal” fetuses or prenatal genetic diagnosis and selective abortion make our motives in “eradicating defects” less suspect? Our modern emphasis on autonomy as a principle important to both law and ethics does not free us from the hard questions posed by our newest technology.”

Three Generations, No Imbeciles is an unflinching look at a chapter in our history that still reverberates today. Utterly fascinating and ultimately unsettling, this should be required reading in every U.S. History classroom.

The Reason I Jump by Naoki Higashida

[Originally posted on November 11, 2013 here]

imagetemp13704 The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism
by Naoki Higashida

I first heard of this book when Jon Stewart had David Mitchell, a successful author in his own right and the man who translated this book from Japanese to English with the help of his wife, KA Yoshida, on his show several weeks ago. I was intrigued by Jon’s enthusiasm about the book, and although I do not have a child with autism, I do have a child with Down syndrome (which is very different from autism, to be sure), and enough friends with children with autism that my curiosity was piqued. Just being a parent of a child with a developmental disability, I think, makes me curious about other developmental disabilities.

My guess is that when reading this book, whether or not the reader has a close personal relationship with someone with autism probably influences the reader’s reception of the book. A blog I follow that is written by a parent of a child with autism reviewed this book and felt that it was like having a conversation with her son that she has longed for. I felt like I gained some insight into an autistic mind reading this book, but it didn’t blow me away. There have been criticisms of the book elsewhere, and speculation that Mitchell might have taken too much artistic license with his translation and that it might not actually be an authentic reflection of the original author’s thoughts. I have no opinion one way or the other as far as that goes – not having a personal connection to autism, I’m really not in a place to say whether or not this book authentically reflects an autistic mind.

It’s a quick read – I read it in a day. Originally written when Naoki Higashida was 13 (he’s now 21), it’s eloquent, humorous, both precocious and adolescent, and insightful. I was bothered by his constant use of “us autistic kids” and “we” – as if he were speaking for all autistic people. While I’m sure there are commonalities among people with autism, like any other group of people, each are unique; it would therefore be a mistake, I think, to assume that this boy’s experience of autism is the universal experience of autism. What stood out to me most was actually something my husband is fond of saying, and that is, “Everyone is coming from somewhere.” In that way, reading this book gave me pause about my five-year old son who has Down syndrome: even when I don’t understand him, even when he does things that confound me, he’s coming from somewhere.

Definitely worth reading, but I think opinions and perceptions of the book will vary pretty widely.

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 Mouse-Proof Kitchen by Saira Shah

[Originally posted on June 14, 2013 here]

16130319 The Mouse-Proof Kitchen: A Novel
by Saira Shah

I received an advance copy of this book and agreed to review it for Book Browse; it’s slated to be released next month.

The Mouse-Proof Kitchen opens with a birth scene: Anna, age 38, is in labor in a London hospital with her first child. The baby’s heartbeat is lost, and the scene climaxes with an emergency c-section. Shortly after baby Freya’s birth she has a seizure, and it becomes clear that something is terribly wrong. An MRI reveals that the baby has polymicrogyria, as well as a host of other issues. After contemplating abandoning her in the hospital, Anna and her husband, Tobias, grudgingly decide to take their baby home, and then impulsively buy a wreck of a mountain farmhouse in the South of France. Their plan is that Anna, a chef, will open a restaurant, and Tobias, a musician, will build a recording studio in the barn where he will compose music.

Life with a profoundly disabled baby is hard – made all the harder by the house that’s falling down around them and infested with rodents, and which they are completely ill-equipped to deal with. They attract a motley crew of quirky neighbors and are constantly at odds with the land and the house and their baby, who has seizures night and day. Through all of this, Anna becomes obsessed with trying to “mouse-proof” her kitchen, and it becomes quickly clear that this is symbolic of all of our inability to keep the chaos and messes of life completely at bay. The book is filled with numerous tortured mother-child relationships, too, in an attempt to illustrate the complexities of all mother-child relationships.

Being the parent of a child with a disability, I’m drawn to books that deal with disability – both fiction and non-fiction. By the time I got a couple of chapters into this book, I thought to myself, “I hate it when people write about disability when they have no actual personal connection to disability.” Then I Googled the author and discovered that she does, in fact, have a daughter with profound disabilities, and this book is a “semi-autobiographical” novel. I was very surprised, as the parents in the book seemed so unlikely to me.

Mainly, the book put me in a bad mood. It was extremely difficult to sympathize with the selfishness of two parents who are contstantly fighting about whether they should even try to love their daughter, with the flakiness of a father who remained so detached and self-absorbed for so much of the story, with a mother who could be so cowardly that she would set her baby down in the midst of a seizure, walk away, and close the door on her so that she wouldn’t have to deal with it. It was impossible not to feel angry that they made their situation harder by choosing to live in such intolerable living conditions – a house infested with rats! – and that they often put their daughter’s very life in peril by refusing to address her medical issues.

When I finished the book, I found this article, and it helped me to understand how the author utilized the creation of fictional characters to sort of have them act out dark things that a lot of parents feel but don’t actually act on. The article did make me feel chastened to a degree: here I am feeling self-righteous and sanctimonious, but the truth is, I have no experience with that level of disability – so who am I to judge? Still, as a parent – even as a parent who sometimes fantasizes about running away from even her typical kids (who doesn’t, right?) – it was still very difficult for me to feel empathetic to the characters in this book.

The writing is good, but I’m not exactly sure what other redeeming qualities the story has. The front cover carries a subtitle, “Sometimes life gets a little messy . . .” next to a mouse. This implies a whimsical feeling that the actual grim story does not contain.

Memoirs of an Imaginary Friend by Matthew Dicks

[Originally posted on May 21, 2013 here]

9781250031853_p0_v3_s260x420 Memoirs of an Imaginary Friend: A Novel
by Matthew Dicks

This story introduces us to a parallel world inhabited by imaginary friends whose existence depends upon their “imaginer friends” believing in them. Narrated by Budo, imaginary friend to Max, an eight-year old boy who “lives mostly on the inside.” Max is different from most of his peers, and because of this, he is often misunderstood and often bullied. Even his parents are largely mystified by him, and his differences cause much tension between his mom and dad; his mom wants to get him help, while his dad wants to pretend that Max is “normal.” Only Budo understands Max and accepts him just as he is.

Although the term “autism” is never used in the book, it’s understood that Max has autism. I have no idea how accurately it portrays a child “on the spectrum,” and I have no idea if the author has any personal connection to anyone with autism. I’m always wary of reading about Down syndrome, being the parent of a child with Down syndrome – wary of stereotypes and misconceptions, especially when reading things by anyone who doesn’t actually have a personal connection to Down syndrome. As I was reading this book, I kept wondering how I would perceive it if I were the parent of a child with autism.

In any case, Memoirs of An Imaginary Friend is a novel, and it doesn’t set out to explain or advocate for autism; it sets out to tell a story about a boy and his imaginary friend, and about love and loyalty and sacrifice: ” . . . the hard thing and the right thing are usually the same thing,” Budo realizes when Max is abducted by a disturbed paraprofessional and Budo figures out that the only way he may be able to save Max is to sacrifice his own existence.

Easy read; really enjoyed it.

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.

Far From the Tree by Andrew Solomon

[Originally posted on January 25, 2013 here]

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.