Down Syndrome Parenting 101 by Natalie Hale

[Originally posted on January 15, 2013 here]

DS101Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier
by Natalie Hale

Surprisingly, there actually hasn’t been a lot of hype about this book in the Down syndrome parenting community – at least not in my circle – since its publication in 2011. I only recently became aware of its existence and wanted to take a gander at it, not so much because I feel in need of a special parenting guide, but I like knowing what’s out there concerning Down syndrome. Maybe this book would offer up some wisdom that’s not already out there.

The book starts off strong with a Foreword by Martha Beck. Let me just say right off the bat that I’m pretty sure I’m in some weird minority in that I did not particularly like her book, Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic
, which I read at a friend’s urging when Finn was a baby. Too full of paranormal and supernatural hooey for my constitution. However, I liked her Foreword in this book. First, she acknowledges “early intervention therapies designed to make him [her son, Adam] more ‘normal.'” Then she says,

But at the end of the day, I knew my child was simply genetically different from those without the syndrome. The more I heard people talk about teaching my unborn baby to be “normal,” the more they began to sound like animal trainers whose speciality was teaching kittens to act like puppies. The assumption seemed to be that everyone wants a puppy, and that getting a kitten by mistake was a tragedy, to be avoided if possible, grieved and mitigated if necessary.

She goes on to say,

They seemed to take it as a given that children with Down syndrome must be made as “normal” as possible, and that their success should be measured by how close they come to “normalcy.”

Yes. That’s how I see it. So I really appreciated that.

In the first chapter, the author says flat out that her 26-year old son with Down syndrome is “average. This book didn’t grow from life with a super-achiever; Jonathan is somewhere in the middle of that wide spectrum we call Down syndrome.” I also appreciated that. There seem to be so many books and articles that focus on the “super-achievers” with Ds, and the truth is that most people with Down syndrome fall in the middle, or average. This feels real to me, honest.

Unfortunately, further on in the book, she loses me with her yogic/spiritual spin on Down syndrome. She makes sweeping pronouncements about the uncanny abilities of children with Down syndrome to see right into people’s souls, about how they are like angels on earth, blah blah blah. I can’t stomach this type of thing, and frankly, I’ve never seen this type of uncanny ability in Finn. Is he friendly to people? Yes! But I don’t think it has anything at all to do with a special intuition endowed upon him by that extra chromosome; I think it’s more a sort of innocence and even naiveté. He’s not jaded. He’s not worldly enough to be jaded, and perhaps he never will be. In any event, he displays less than angelic behavior all the time, and I don’t think he’s unusual in that regard – so the whole “angel” spin doesn’t sit well with me.

Despite Martha Beck’s remarks about interventive therapies for kids with Down syndrome in the Foreword, the author goes on to say, “Most parents choose to enroll their baby in Early Intervention; it’s considered absolutely best practice.” Blech. She acknowledges that some kids do fine without EI but the only example she gives is a family that had several children, all of whom were homeschooled. I honestly wish there was more discussion about the pros and cons of Early Intervention – at least as it pertains to Down syndrome (I can’t presume to speak to other disabilities since I’m not knowledgeable about them). I wish Early Intervention were presented as more an option than a stringent necessity. I think there needs to be open discussion about what the underlying goal of EI is – to “normalize” kids as much as possible? – and I think a lot more thought and discussion needs to take place about the actual value of EI. Disability Is Natural: Revolutionary Common Sense for Raising Successful Children With Disabilities
is, as far as I know, the only book out there that presents a viewpoint on EI that differs from what’s widely accepted; every other book out there on Down syndrome presents EI as a must.

In any event, Down Syndrome Parenting 101 does contain some useful information on schooling for kids with Down syndrome, and one of the big things that drew me to read this was that I had read somewhere that the author is a Down syndrome literacy guru, and I’m at a point with Finn where I am seeing how ripe he is to learn beginning reading, and what a positive impact that could have on his future school placement (among other things). And I’m also completely intimidated by the prospect of undertaking the endeavor to teach Finn to read, so I was looking for information and encouragement to that end in this book. It did at least set me on the right track as far as beginning to research methods that seem to work with the visual learning style that is inherent in Down syndrome.

All in all, I think this book has a lot of fluff in it, some useful things, but it could have been a lot more invaluable than it actually is. For instance, I was secretly hoping for a chapter devoted to Potty Training Kids With Down Syndrome, but no dice. Despite my long review here, it’s a pretty quick read, and it would probably be somewhat useful to new and fairly new parents of children with Down syndrome.

Bloom by Kelle Hampton

[Originally posted on April 11, 2012 here]

Bloom: Finding Beauty in the Unexpected by Kelle Hampton

I’ve been reluctant to read this book ever since I first heard, months ago, of its impending arrival on bookstore shelves, given that I’ve been turned off by the whole Kelle Hampton brand since her now famous birth story first started making its way around the internet over two years ago. I finally relented because, let’s face it – it’s pretty much the biggest thing to hit the Down syndrome community since Road Map to Holland. There’s been a ton of hype and promotion of this book, and in the end – especially since, as a parent of a child with Down syndrome myself, I try to read everything that hits the Down syndrome literary landscape – I caved and downloaded Bloom to my iPad.

I won’t lie and say that I wanted to like this book. What I wanted was to be able to read it with an open mind, which I knew would be difficult given my well-settled distaste for most of what Kelle presents and seems to represent, and I wanted to try to understand what it is about Kelle and her story that seems to appeal to the masses so much.

When I first read the story of Nella Cordelia’s birth a little over two years ago, I found it all to be unreal. So much of it seemed staged, and there was very little I could relate to – from the Martha Stewart-esque party favors, to the full makeup while giving birth, to the photos that seemed absolutely intended for a vast audience. Most of all, I just couldn’t swallow the notion that this woman “got over it” – her baby’s surprise diagnosis of Down syndrome – so quickly and virtually effortlessly. It seemed that within 24 hours, she was fine with the whole thing, and I called bullshit. Having gone through it myself about a year and a half before Kelle did, I knew that there is a process of grief involved in coming to terms with birthing a baby who turns out to be different from the one you planned for.

In Bloom, we find out that, indeed, she wasn’t over it in 24 hours. But her account in her book is almost as unreal as the initial nearly griefless account she documented on her now famous blog, Enjoying the Small Things. Rather, there was earth-shattering grief, there was “writhing in bed” with the pain of it all, there was crying “for seven hours straight,” so that in the morning after Nella’s birth, Kelle looked like a prize-fighter with eyes so swollen with shed tears that they were mere slits in her face. And this went on for days.

That’s the thing about Kelle Hampton: it’s all about extremes. Nothing is average or middle-of-the-road, and the constant extremity of it all diminishes her credibility. So does the fact that in the midst of this soul-shattering grief during the first couple of days in the hospital, she was able to pull herself together enough to notice that the on-call OB was hot. In fact, she refers to him in her book as “Dr. Hottie” as she recounts asking him for something she could take to help her “not be so sad.” I can’t help but wonder how it would go over had her husband referred to – or even noticed – a nurse who was “hot” so soon after the birth of their daughter, and during such a time of initial grief, to boot.

I spent a good part of the book feeling disgusted and rather pissed off. Why, oh why, was her grief so extreme? Yes, she gave birth to a baby and received a surprise diagnosis of Down syndrome. That is a shock, and one that everyone who is faced with must come to terms with in their own way and their own time. But, I have to say, as one of many, many moms whose baby’s surprise diagnosis was accompanied by immediate health issues, immediate major surgery, an extended stay in the NICU, and prolonged feeding difficulties, it is very difficult not to feel like – if this is the true account of Kelle’s experience – that she was a big, spoiled baby. Nella was fine. The worst – and only – issue she faced was jaundice, which was treated with photo-therapy right there in Kelle’s hospital room. And though Kelle had a normal, uncomplicated vaginal birth, she was allowed to remain in that hospital room with her new daughter for five days – she never had to suffer through forced separation, she had full access to her daughter at all times. Nella nursed like a champ and gained weight from the get-go. Kelle’s hospital room was constantly filled with dozens of friends from her “net,” bringing her food and beer from the outside, pampering her and holding her hand while she cried for hours on end, keeping her company while she showered, and handing her her makeup so she could primp in order to face this ghastly ordeal.

Sigh. I think it goes without saying that this is not the average Joe’s experience. And I don’t know that Kelle realizes this, either – that truly, in the grand configuration, she has lucked out at every turn.

After five days in the hospital, and after being reassured by her pediatrician again that Nella is “a normal, perfect, beautiful baby,” Kelle tells the doctor,

“You know,” I told her, “I’m gonna do this differently than you’ve ever seen it done before. I’m gonna come up with my own way, and it’s gonna be amazing.”

Thereby rejecting the entire Down syndrome parenting community who came before her (much like Rick Smith over at Noah’s Dad) without even getting to know them, many of whom would become her most ardent fans and supporters. Go figure.

The rest of the book chronicle’s Nella’s first year – or, rather, Kelle’s first year as Nella’s mother, because really, this book is about Kelle and not Nella. Over that first year, we are treated to various parties and trips and outings, a physical therapist who is “a little bit hot,” a recounting of a wild night of drunken skinny-dipping with the neighbors (not really sure what this had to do with anything, except maybe to show everyone how super cool she is?), her ability to identify with women who struggle with infertility because she suffered through four long months of trying to get pregnant, many, many photographs (227 to be exact, 103 of which contain Kelle herself – in case you were wondering), and, oh yeah, the breakup of her parents’ marriage when Kelle was a kid.

I actually do think that this little bit of history is pertinent to the whole Kelle story. Kelle and her older brother and sister had an idyllic childhood with a dad who was a pastor and both parents who approached child rearing like it was “an Olympic event.” When she was in the third grade, she was called out of class to leave school early for the day because, as it turned out, her mother had packed up their belongings and left Kelle’s dad because, as she later found out, her dad was gay. She writes:

“So, for what seemed like six hours, my mom and grandma did what you do when you love your littles and want to spare them from hurt. You pretend it’s okay. You fake smile and tell stories and overcompensate for the slightest moment of awkward silence with forced normalcy.”

And that, my friends, is why she has this need to make everything perfect, or at least to appear perfect. She never learned to truly cope. She learned to fake it, and she learned that if you can make it look good, then it is good. Appearances seem to play such a huge part in the whole Kelle Hampton brand, which to me, makes everything seem very shallow.

Her writing is mediocre – not horrible, but certainly not stupendous. I’ve long wondered if her writing could stand on its own without all the fabulous photographs, and I think the fact that this book is about 50% photos speaks volumes. While she has the ability to dig deep and come up with something meaningful, she’s very prone to melodrama, canned-sounding nuggets of wisdom, clichés, and sophomoric expression. This is not the writing of a mature woman, but rather, of a girl who sees herself as a “rockstar” and a “badass,” and enjoys her position up on a high pedestal.

“I walked through the parking lot, breathing heavy and chanting to the rhythm of my jeweled sandals hitting the pavement, ‘I’m a rockstar. I’m a rockstar. I’m a rockstar.'”

I think the thing that bothers me the most is this whole facade of Kelle having overcome so much adversity and triumphing in spite of it.

“At the fork in the road on this journey, I thought long and hard before I chose my path. And, for the sake of everyone – but especially my kids, who needed a happy mama – I took the path of positivity.”

She is widely seen – and touts herself – as a “positive person,” as someone who sees her glass as “half full.” The truth is, though, that her cup runneth over! And yet, she’s lauded for seeing it as half-full? And what adversity has she overcome? A broken home? Millions and millions of us have come from that and worse. A child with Down syndrome? Tens of thousands of us have also dealt with that, and in her case, Down syndrome is barely more than a label, seeing that Nella has been fortunate enough to be minimally affected by her extra chromosome.

Kelle believes in “living life big,” but to me it just comes across as grandiose and materialistic. I find it very disturbing and puzzling that so many people have chosen someone with those ideals to hold up as a role model.

In the end, she manages some reflection, some regret, and some gratitude, but it’s not enough for me. Fundamentally, I think Kelle will remain too focused on appearances and the audience she now caters to and depends upon for her popularity. I think those who already love her and what she presents will love this book, and those who already don’t like what she’s selling won’t like this book. People who read it and are not themselves touched in any way personally by Down syndrome probably will see her as noble and courageous, since most people on the outside of this experience still see Down syndrome as something inherently tragic, and that to accept it and embrace it is heroic.

I’m most concerned about how this book might impact expectant and new parents facing a diagnosis of Down syndrome; if they are as fortunate as Kelle has been, then it might be a welcome addition to their bookshelf; if, on the other hand, they are like many other parents who do not enjoy the good fortune and resources Kelle has, I think it just might make them feel like shit.

I think Kelle still has quite a bit of blooming to do.

Meet Annie by Heather J. Scharlau-Hollis

[Originally posted on April 10, 2012 here]

Meet Annie by Heather J. Scharlau-Hollis

In this short and sweet book aimed at young children, we meet Annie who is just like you and me in all the ways that count to little kids: she likes to play with her toys, she likes to splash around in her swimming pool, and she sometimes gets in trouble. But Annie is also a little bit different – she has Down syndrome. Although the book doesn’t explain what Down syndrome is, it touches on the fact that Annie looks a little bit different and learns a little bit differently, and that everyone is a little bit different in their own way, and those differences make us who we are. My favorite aspect of the book is how the author invites and encourages its audience to identity with Annie by asking a question at the end of each page:

“Sometimes my zipper doesn’t zip right. I ask Dad for help. Do you ever need help?”

“Sometimes I cry when I get scared. Do you ever get scared?”

Encouraging empathy and compassion without resorting to condescension or stereotypes, this is a wonderful book that should have a place on everyone’s bookshelf who is touched by a child with Down syndrome.

The Shape of the Eye by George Estreich

[Originally posted on February 4, 2012 here; a more extensive review I wrote was published by Literary Mama here. The Shape of the Eye was released in paperback with a new afterword in 2013.]

The Shape of the Eye by George Estreich

[Note: This review originally appeared here in August, 2011 in my former book blog, Book Lust. I’m republishing it here because it’s that important a book; you can also read my interview with the author, George Estreich, here.]

A few weeks ago, in my email inbox was an email from a man I’d never heard of before, asking me if I would be willing to read a book he wrote and recently had published, and to write a review here on Book Lust. I still don’t know how he stumbled upon my book blog, and I was flattered that a bona fide author would think that anything I had to say about a book might actually carry some weight with anyone. Without hesitation, I agreed to read and review his book because I was flattered to be asked, because I like the idea of having any sort of contact with an actual author (being a wannabe writer myself), but mostly because the subject matter of his book is near and dear to me.
I have read numerous memoirs about having a child with Down syndrome. The Shape of the Eye is, hands down, the best one I’ve read. Where Jennifer Graf-Groneberg’s Road Map to Holland was a lifeline to me in the days and weeks immediately following my son Finnian’s birth, diagnosis of Down syndrome, and major surgery as a newborn, soothing me and assuring me that the grief I was feeling was normal and that it would pass in time, The Shape of the Eye examines that grief, without judgment.
Like so many parents of children with Down syndrome, George Estreich and his wife were shocked by their second daughter’s diagnosis soon after her birth, and like so many of us, they found themselves suddenly thrust into the alien territory of raising a child who is different, who is largely, in an abstract way, seen as defective by society. His book, which he spent nearly a decade doing research for and writing, is a personal, heartfelt, often witty, account of raising a child with Down syndrome. More than that, however, it is also a historical account of what has shaped our attitudes about Down syndrome – the truths, half-truths, non-truths, contradictions, and paradoxes. This is a book not only about Down syndrome, but about family, and ethnicity, preconceived notions, and what it means to belong.
Mr. Estreich, a stay-at-home dad and a poet by profession, is an extremely gifted writer. I could not stop turning the pages and throughout the book often felt as if I could easily sit down with him over coffee and shoot the shit about Down syndrome, about parenting, about family, about life.
Five stars. I cannot recommend this book highly enough.

The Politics of Down Syndrome by Kieron Smith

[Originally posted on December 8, 2011 here]

The Politics of Down Syndrome by Kieron Smith

This book arrived in my mailbox right on the heels of my recent post about prenatal screenings and Down syndrome (which was picked up by Yahoo! Voices here), and it is right in line with my own views about prenatal screenings that have evolved over the last three years since Finn was born.

I was originally notified about this book by George Estreich, author of The Shape of the Eye. Subsequently, Kieron Smith sent me a copy of his book to read and review, and it really resonated with me. I began reading it, and then quickly realized that there was so much the author had to say that I wanted to remember, so I started over, going through it with a yellow highlighter.

Like The Shape of the Eye, The Politics of Down Syndrome examines how Down syndrome has been treated by the medical profession and society historically, and how our attitudes today are still very much shaped by old prejudices and outdated ideas about Down syndrome. While the author has a young daughter who has Down syndrome and he does say in the book that having her has definitely influenced his own evolving views, this is not a memoir. It’s more a sociological study. In it, he covers three main areas:

  • Prenatal screenings and how pregnant women are manipulated by a medical profession lacking in a genuine understanding of Down syndrome;
  • Education of children with Down syndrome; and
  • Inclusion and society’s views
His views also fall very much in line with Kathie Snow’s Disability is Natural – that is, that disability is a normal part of human diversity which should be embraced, and that inclusion in education and all aspects of life is what is called for for the betterment of not only people with disabilities, but for society as a whole.
The only criticism I have is that the book could use some serious editing; I noticed a lot of typos, poor punctuation, run-on sentences and incomplete sentences. I’d love to get a hold of the manuscript and give it a good overhaul! The content is excellent, but it needs a little polish.
At only 72 pages of text, it’s a quick read, but this slim little book contains some very important stuff. While it focuses on the state of things in the UK (where the author resides), most of it can definitely be applied to the U.S. I was actually a little surprised to discover that things over there seem to be very similar to things over here as far as the issues covered in the book.
A must read for parents, expectant parents, educators, and medical professionals.
I have an extra copy to give away – leave a comment if you would like it.

The Junkyard Wonders by Patricia Polacco

[Originally posted on October 20, 2011 here]

The Junkyard Wonders by Patricia Polacco

When I picked my second-grade twins up from school yesterday, their teacher (also a friend of mine), tearfully told me about this book she had just finished reading to the class, and she urged me to take it home and read it, so I did.

Young Trisha has a learning disability and is the target of teasing and bullying. She longs to go live with her dad and grandma in Michigan and make a fresh start, where nobody will know how dumb she is. In Michigan, however, she is bewildered and crushed to find herself in a “special” class, just like in California where she lived with her mom.

Enter Mrs. Peterson, the teacher of this class – known as The Junkyard for its misfits, oddballs, and seemingly discarded kids. Her introduction misleads the reader into thinking she is a harsh character, until she explains the definition of genius to her class:

“Genius is neither learned nor acquired.

It is knowing without experience
It is risking without fear of failure
It is perception without touch
It is understanding without research
It is certainty without proof
It is ability without practice
It is invention without limitations
It is imagination without boundaries
It is creativity without constraints
It is……extraordinary intelligence!”

… and tells them that this describes each of them.

And thus follows an uplifting narrative about how these kids find their own worth, and their own special genius.

This story, inspired by the author’s own true-life experiences, is a wonderful parable about diversity, tolerance, and the value of all people, no matter what their differences or limitations might be. I love that my kids’ teacher is sharing these principles in her classroom. A wonderful story for teachers and parents alike to share with elementary school- age children.

Schuyler’s Monster by Robert Rummel-Hudson

[Originally posted on October 11, 2011 here]

Schuyler’s Monster: A Father’s Journey With His Wordless Daughter by Robert Rummel-Hudson

Is it possible to have a love-hate relationship with a book? A few days after finishing this book and trying to analyze my feelings about it, I can only conclude that I have very mixed feelings about it.

This memoir recounts, from the author’s perspective, the first seven or so years of his daughter’s life. Born with all outward appearances of “normalcy” and good health, by the time Schuyler was two, she had not developed any language skills at all, and so began her parents’ search for answers. Eventually, after a misdiagnosis of an Autism Spectrum Disorder, Schuyler is eventually correctly diagnosed with bilateral perisylvian polymicrogyria, a neurological disorder – specifically, a malformation of the structure of the brain – that commonly affects speech and often results in a host of other issues.

I was hooked from the first page; I really appreciated the author’s sarcasm and wit, and I often found myself laughing, or at least chuckling, out loud. He seems like a very personable, down-to-earth guy, which makes this book very readable.

It wasn’t too long, however, before I started feeling very bothered by certain things:

While still looking for answers to their daughter’s wordlessness, and being well aware that something was going on, both the author and his wife cheat on each other. The author almost seems to excuse it or rationalize it, explaining how depressed they both were, and how they were unable to give each other the comfort they both needed during such a difficult time, and so they each sought comfort in the arms of third parties (unbeknownst to each other until later). I had a hard time with this, having confronted many a dire marital period myself, and never considering cheating. I know this is pure, unadulterated passing judgment on my part, and hey! if they’ve both made peace with it, that’s their business, right? I’m only saying it bothered me rather deeply.

“But the world is messy and chaotic, and the heart is retarded.”

Yes, that’s a quote from the author in the book. He’s talking about the affair he had. It stung and caught me off guard to see the word “retarded” thrown out there by a parent of a child with special needs.

To that end, it also felt to me throughout the book that the author maintained some sort of sense of . . . superiority? about his daughter and her condition.

Describing the special ed preschool class Schuyler was placed in:

“Another little boy suffered from Down syndrome and would, without warning, run across the room and smash into walls. I watched all this during a class visit one time, and my heart broke for the parents of these kids, parents who were searching for far different answers than we were.

“Through the chaos, I watched Schuyler as she sat against the wall, quietly thumbing through books and watching the other kids run through their wild, hapless routines. it may not be a very polite way to put it, but she looked for all the world like a child watching the circus. She was too young to understand the pain these kids were in, and too curious to ignore them.”

So many things bothered me about this little passage: the blatant pity, the arrogant presumptions about the other kids and their parents. And “suffering” from Down syndrome? It’s not just that it’s not PC to say that, it’s just not true. My son has Down syndrome, and I can assure Mr. Rummel-Hudson that he’s not “suffering.” I kind of resented the feeling throughout that he held his daughter out to be better, somehow, than kids with other conditions or disabilities.

What is paradoxical, however, is that throughout his memoir, he refers to Schuyler as “broken.” Always implicit in this description is that “normal” is the ideal, and anything less is defective, bad, wrong. Referring to her condition as “the monster in her head,” bringing to mind something terrible and fierce, contributes to this sense that he sees his daughter as imperfect, and he never really stops lamenting this.

I kept waiting to see personal growth and evolution in his attitudes, but I never really did. Throughout the book, even after receiving his daughter’s diagnosis, he continues to throw around terms like “idiot,” “moron,” and even “epilepsy-inducing.” While I appreciate irreverence, certainly, this just seemed insensitive.

“We’d experienced sorrow and worry, and we’d experienced hope. We’d seen our worst fears surpassed, and our greatest expectations exceeded. Until Schuyler entered my life, I’d never known how much I could hurt for another human being, or how proud I could be of one. And through it all, Julie and I had wavered and fumbled and gotten it right and gotten it wrong, but Schuyler had never changed or given up hope or behaved as if she believed she was anything other than exactly who she wanted to be. While we tripped and panicked and fretted, Schuyler quietly persevered.”

Despite the revelation and this uplifting passage at the end of the book, I never got the sense that the author ever stopped feeling victimized by the whole thing. And while he described himself as agnostic, he seems to very much believe in God, but is pissed off at God under no uncertain terms.

All that said, he and his wife show what it means to become strong advocates for their daughter, and I felt a growing sense of respect for this. I was very inspired by their perseverance on Schuyler’s behalf, standing up to a school district that seemed to only want to warehouse Schuyler and not actually meet her unique needs.

Like I said, it’s a love-hate thing I’m feeling. I do recommend the book, however.