What Matters: a new book on disability, community and love, reviewed by Naomi Ortiz

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“What Matters: Reflections on Disability, Community and Love” What Matters: Reflections on Disability, Community and Love is a new book by Janice Fialka, reviewed by Naomi Ortiz Community connections can happen in any place, at any time. Recently I was on a strategy conference call and I mentioned the work I do around Disability justice. A ...

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Behavioral Issues and Down syndrome have recently caused some issues with my child with Down syndrome at school. This is what we did

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Behavioral Issues and Down syndrome Moxie, my daughter who has Down syndrome, has recently had behavioral issues at school. A bit of background: Moxie goes to The Best School Ever. She has a wonderful, caring teacher and Moxie's aide is a lovely woman whom Moxie has known and trusted for years now - ever since ...

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parent's guide to down syndrome book cover

The Parent’s Guide to Down Syndrome

“The Parent’s Guide to Down Syndrome” is exactly that: a book that is BY parents and FOR parents of individuals with Down syndrome. It is a comprehensive grassroots effort that shares a wealth of experience and diversity about pretty much everything a parent will benefit from knowing.

From Grief to Celebration: Book Review + Author Interview + Giveaway

Part 1: Review of "From Grief to Celebration"

I don't know what was in your Down syndrome packet after you connected with your local organization – and I don't know what your initial reading list was. But I'll tell you this: in my packet was "The Light at the End of the Tunnel" – hello there, death! – and on my bookshelf were real winners that depressed the dickens out of me – like  Babies with Down Syndrome: A New Parents' Guide.


I read tomes about parents dealing – their stories of learning to accept and love their children, but in all honesty, I think when you are faced with the knowledge that your unborn child will be coming with an extra chromosome, it's enough to just grapple with all the prejudice and stereotypes out there regarding Down syndrome. It's hard to really, truly handle and relate to many of the memoirs – those have a better time and place later, in my opinion.


Margaret "Gary" Bender  (– yes, she is a woman and her nickname is "Gary"!) wrote a gem of a slim book about how her family learned to embrace Down syndrome. She divided the book into 10 chapters – with a bonus one! – and folded each of the chapters into a verb that related to her path of 'grief to acceptance'. They are short. They are easy to read. They are, in my opinion, bite-sized, perfect for a new parent, or one who is just entering the world of parenting a child with Down syndrome.


The chapters and topics covered are flexible in that they are not too specific nor too broad. As they speak from the mother of a teenager with Down syndrome – rather than a young child – there is a ring of assurance, confidence and positivity that can only be gained from years of actual experience. While there is an awful lot of material from parents of young children with Down syndrome, there is remarkably little from parents of older teens.


I personally enjoyed the anecdotal natural of the book. Gary is a blogger, and her book reads a bit like a blog. It's direct, unpretentious. I wish I had read it when I was first starting out – and I sincerely hope word spread on this great little nugget, giving new parents a glimpse into a happy future, with pointers to be aware of along the way.


Part 2: Interview with Margaret "Gary" Bender

1. You have written a book about your daughter Alex who was born with Down syndrome – and your experience as a parent of a child with Down syndrome. Why did you feel the need to write this story?

When Alex was born 19 years ago, we met many families with children with Down syndrome, who guided us and shared their promises of the future. A lot has happened in those 19 years in terms of education, inclusion and acceptance and I hope to share the lessons of our journey and the message of the promise of a bright future for families with young children with special needs.

2. What do you hope readers will gain from your book and your perspective?

My hope is that readers will learn from our journey, and embrace Down syndrome as an unexpected opportunity to grow and learn.

3. What was the most challenging aspect of telling your story?

I tend to be a Pollyanna at times, and I do not want to give the impression in the book that life is always rosy. Certainly we have bad days or weeks, but these times pass and we move on. Life for us is not always a bed of roses, there are also thorns.

4. If you had to write it all over again, would you change what you said in your book? If so, what would that be?

I would focus more on our educational and community based experiences, and provide detail about how the right supports, services and confidence facilitate success for all children. My husband likes to say "it takes a village" to raise a child, and this is true of children of all abilities. 

5. How did you come up with the title of your book and how do you think it reflects on the story's overall message?

The title is derived from the ten chapters, (plus one bonus chapter!) or verbs I use to describe our journey. 

6. What was your favorite part in your book?

That's a tough one as it was great to relive the last 19 years. I guess I would say the chapter entitled "Incorporate" where I share Alex's siblings reflections on having a sister with Down syndrome. They have grown up to be caring and compassionate people, who are (unknowingly) active advocates for all people with disabilities.


7. If there was one overall message that you'd like your reader to come away from From Grief to Celebration with, what would it be?

I quote from the final chapter of the book "Celebrate".

"Everyday we celebrate the pure joy of Alex, our beautiful daughter, sister, granddaughter, niece, cousin, student and friend who continues to enrich  our lives in unimaginable and immeasurable ways. Her very existence has given us the power to become better people and more emphatic community members".

8. What projects are you currently engaged in? Any new books from you on the horizon?

I really enjoy posting as often as possible on our blog, "The Ordinary Life of an Extraordinary Girl". Currently I am republishing the "Educating Alex" series, which shares our experiences with school from birth through high school. Perhaps that would make for a good book! 

I'd also like to document Alex's journey from high school, through college, employment, relationships and adult life. 

9. What question have you always wanted to be asked in an interview? How would you answer that question?

This is a question I am often asked and enjoy answering – "Where will Alex live when she is an adult?" And my answer – "Where ever she wants". I do have some caveats however including safety, access to employment, social opportunities and transportation.  

10. Do you have any questions for the reader?

What are your child's dream for their futures and how will you honor them?

Thank you, Gary!


Part 3: Book Giveaway
I'm giving away my copy – while I loved the book, I can't keep anything anymore because of the Pan Am Overland. So just leave a comment to enter. Open to anywhere, winner decided by random.org a week from today, August 29th.



Connect with Gary:

Blog: The Ordinary Life of an Extraordinary Girl

Facebook: (personal) https://www.facebook.com/gary.h.bender

                    (book) http://www.facebook.com/pages/The-Ordinary-Life-of-an-Extraordinary-Girl/165047126851472

Twitter: @garyhbender
..or email her!
Buy the Book
It's the best price on her blog – a flat sum of $12.50. Click here – it's a link to paypal on the right hand side.
It's also on Amazon – only 3 copies left – for $13.99.



Bloom, by Kelle Hampton

I had arrived in a comfortable place with my feelings regarding Kelle Hampton. I admired the money she raised for NDSS (assuming, of course, that the money isn’t going to padded salaries but rather to assisting individuals with Down syndrome). Happy that she had toned down the seemingly endless tea-parties on her popular blog, Enjoying the Small Things, and had turned some attention to Down syndrome. Because, as you see, she had been lifted high by the Ds community and had accepted leadership but wasn’t stepping up much – besides to stand behind podiums and accept awards.


It was a nice spot, that comfortable spot. It was warm and friendly and I rather liked tapping in to her blog from time to time to see what was new.


Imagine then my astonishment at cracking open her memoir, Bloom: Finding Beauty in the Unexpected and discovering almost immediately that it must have been written by an entire other.


Using broad strokes full of sweeping generalizations, worn platitudes, exhausted cliches and sophomoric adjectives, Kelle paints a picture of her life. Unlike Monet however, the painting does not become a masterpiece when viewed from a distance. Rather, it’s becomes a mash-up of gloss, painted thick but smelling of tempera – which, when stormed upon, will run.


She starts her book off with her “perfect” life – a life full of friends, good times, fun, and things. Then she has Nella, her daughter with Down syndrome and she undergoes great pain and grief before transforming herself from someone who likes to have a good time and party while wearing great clothes, drunk – to someone who likes to have a good time and drink while wearing great clothes.


Speaking of drinking: Kelle and her husband Brett don’t seem to ever talk about problems; rather, they drink through their problems. They have this “unspoken pact” to not “bring the other down” by talking about the things that have real meaning in their lives. Rather, Brett uses his “uncanny ability” in passing out the beers. In her (5 day) hospital stay with her heartbreak over having Nella, Kelle is with her friends while Brett brings the beer. The night she wrote her famous birth story – she wrote through her agony; Brett brought her beer. It seems that at every turn, they are “cracking a cold one.” The former alcoholic in me got thirsty with all that drinking; the wife in me that relied intensely on her husband to pass through her own grief (and yes, despair) at bringing a child with Down syndrome into the world was absolutely at a loss as to how one could go through this without talking about it with one’s partner.


Kelle’s writing about the “hot” therapist and the “hot” doctor in the hospital does nothing for me in developing even a smidgen of a sense of admiration in the loyalty, strength and bond of her relationship with her husband, either. Rather, I was struck at the seeming senselessness of their union – why be together? Just to drink? Get wasted and skinny dip with the neighbors, as she writes of?


The content being what it was for me, I turned to look and absorb her actual writing – the business of crafting sentences, pulling them together with meaning. I think Kelle does a good job of writing in her blog, after all.


I felt lost in a maze of repetition, contradictions (in the very same paragraph!). She likes to cuss, yes, but unlike say, Bill Bryson, she doesn’t insert a well-timed swear word into an elegant sentence, throwing the visual picture into quick comic relief. Nor is she like other authors who just have a potty mouth throughout and it’s a part of who they are, with a writing style being wrapped tight around each and every cuss word. No, Kelle does not cuss like that – she cusses like she’s out to prove how “bad ass” she is, that she’s a “rock star” – and she really, really likes to call herself a bad ass rock star. She throws in her “hell” and her “damn” or whatever like it’s going to hammer that final nail, firmly hanging her neon sign, but coupled with the melodrama with which she drenches her life, if feels a lot more like reading someone’s embarrassing diary from high school than a book that is supposed to pack an inspirational punch.


“Bloom” being as far from an inspiration as a book could possibly be for me was actually depressing. Literally. It triggered an attack of depression. If this book is making bestseller lists (as it is), if this book is receiving great reviews (as it is), then its success obviously stems from the deep and essential pity that the general population feels for a young mother who receives a surprise diagnosis upon the birth of her child with Down syndrome. The success of this book hammers the point of how much further the walk of inclusion and advocacy remains, because I am confident there is absolutely no way this book could be successful on the basis of superior writing.


Furthermore, I honestly do not understand the portrayal she paints of herself as one who finds the good in all things, who fleshes out even the tiniest bit of the positive and “sucks the marrow out of life”. Her life is one blessing after another. She has money. A full backing of friends. She has health, beauty. She even has a gay dad, for crying out loud! What more could one ever ask for? I would believe her ability to be a solidly bright and positive spirit if I saw something in her life – besides having a child with Down syndrome – which was truly a challenge. Getting burned like NieNie maybe. Or growing up poor – or ugly. Or teased. Or abused. Or just…something more than the awfulness of owning a house with 15-year old tiles and not wood floors…Or having a child with Down syndrome… sigh.


On the bright side – the photos – of which there are an abundance – are first-class. Kelle is in over half of them, so obviously some uncredited soul is highly involved. The ones she did take however, are lovely. The photos are extremely important in changing perceptions of Down syndrome, and I acknowledge her for making Down syndrome far more appealing to the mainstream US than it probably ever has – the gloss and “perfection” with which she continues to paint her life includes Nella. Nella – and therefore by extension, Down syndrome – is thus portrayed by Kelle while garbed in fashionable attire, at good angles, in lovely light and with fetching accessories.


I wish I liked this book. I didn’t. I think that while she is a very good blogger, she is not a very good writer – living proof that there is a an enormous difference between handling a blog and writing a book. Furthermore, I am upset that she is a representative of the Down syndrome community, indeed she is the representative. I’d rather have George EstreichMartha Beck or Kathryn Lynard Soper; people who truly know how to craft a memoir. People who have a maturity and depth of understanding regarding Down syndrome and disability that does not include laughing at their friend’s drawing of stick figures of men with large penises under a table at an emotional meeting in which they are present as an honorary speaker.


Or, if they do, have the good sense to not write about it in their books.

A Good and Perfect Gift by Amy Julia Becker

I am re-posting this review as a refresher for next week, in which I will host Amy Julia Becker on this blog in an author interview (and giveaway!).

This is why I like Amy Julia Becker: she takes a complimentary comment (“What a perfect family”) – holds it up to a biblical lens “Be perfect, therefore, as your heavenly Father is perfect”, reflects on it then whips out her Greek dictionary (she has a Greek dictionary!!! who has a Greek dictionary?!!) and discovers the root of the word, perfect: telos. Translated, it can be as she discovers, “perfect” or it can be “wholeness, completion, the end for which you are created.”

A Good and Perfect Gift. A gift of wholeness, of completion, the gift of her daughter, Penelope, who was gifted herself with an extra chromosome.

Amy Julia is an honest examiner with a clean poetic bent. She infuses the house of her Faith with huge blasts of spiritual air, gulps of (sometimes painful) self-reflection and a relentless pursuit for truth. Finding the core of the matter.

I cried when I read parts of her book. I don’t want to be a spoiler yet I want to talk about the things that she wrote of that had me up all night. Like wrapping her mind over and around the term “mental retardation” – and what that meant – or didn’t mean. Or disability. Or Jesus’ call to “follow me where you do not want to go” – and what that would mean. how I still well up reading certain lines like that “this delightful daughter of mine was going to endure a list of things that I wold never choose for her.”

I loved the frank and fearless way Amy Julia recounted her feelings regarding the “encouraging” things people said she could look forward to with a child with Down syndrome ( like, um…that they could take the bus to work alone or be a dishwasher – YAY!) and led us through to what really brought her a measure of comfort – stories of people with Down syndrome who might teach her to “slow down, to love deeply, to compete less, to live more fully – these are the stories that bring hope.”

She scrutinizes that same hope. Fear. Investigates the “soft bigotry of low expectation.” Mulls over concepts of beauty and our culture. Faith. Amy Julia is an analyzer and let me tell you: she takes the scalpel and dissects faith. She is a hard-thinking Christian, the kind that I (not being Christian), most thoroughly enjoy.

This book will is a must for all Christians – but perhaps a trifle obviously, I don’t believe you need to be Christian to appreciate it or enjoy the story of her journey to acceptance and more, appreciation for her daughter.

To connect with Amy Julia Becker:
1.Amy Julia’s blog: Thin Places (and yes – it inspired my whole Thin Places series! Thank you, Amy Julia!)
2. Amy Julia on  Facebook
3. Website: http://www.amyjuliabecker.com/

Amazon has a $2.99 kindle special on her book until the end of June – it’s a great time to grab your copy – click here.


George Estreich Author Interview

This is the first of a two-part series – a conversation with George Estreich, author of The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit , and Amy Julia Becker, author of Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny.
George Estreich will be giving away one copy of his book, The Shape of the Eye. To enter the giveaway, please leave a comment answering his question for you. That’s all you have to do to enter. Winner will be chosen by random.org – make sure your email address is included in your comment so that we can let you know you won.
More on George Estreich:
Reviews of his book (on this blog) by Lisa Morguess and Alison Piepmeier

Interview with George Estreich

You have both written memoirs related to your daughters, both of whom were born with Down syndrome. Why did you feel the need to write about your experiences?

In the beginning, writing the book didn’t feel like a choice; it was something I had to do. I was trying to make sense of my experience through writing about it, and to build continuities between the new life and the old—though I wouldn’t have put it that way then. As the book evolved, though, my motivations became less immediately personal. I wanted, in a small way, to join the conversation, to influence the way Down syndrome is seen.
What do you hope readers will gain from your memoir and your perspective?
 I wanted, and want, to change readers’ minds. Many, whatever their intentions, have settled beliefs about what Down syndrome is and what the people who have it are like. Especially when those beliefs were mistaken, I wanted to challenge them, to replace false answers with truer questions.
That’s why I told the story of a single girl: to question the idea that one child with Down syndrome can stand for all children. And it’s why I told my story, spending a fair amount of time on my own misconceptions; I wanted to show the way in which my mind was changed.
One of the best parts of having the book out in the world is that I get to meet readers. The book is the beginning of a conversation, or many conversations, and it’s a true pleasure to continue that conversation with those who are interested.
You have read each other’s books; in what ways do you think your books are both similar and different?
For both of us, the arrival of a child with Down syndrome made us question our assumptions. Both of us felt the need to grapple with our questions publicly, in writing. Both of our books are deeply personal, and reveal a great deal about our own reactions to our children, and yet are circumscribed too: if I had to guess (I haven’t asked), I’d say that Amy Julia probably shares some of my wariness of memoirs that tell too much, of self-exposure without revelation.
One obvious difference is that Amy Julia’s writing is framed in Christian terms, and mine is not. At the same time, both of us are clearly fond of irreducible mysteries, and may even prefer questions to answers, so this difference—while significant—is not as huge as it might seem.
What was the most challenging aspect of telling your story?
 Integrating research with storytelling, managing large structures, and telling the truth without doing harm—or without doing too much harm.
If you had to write it all over again, would you change what you said in your book? If so, what would that be?
 Surprisingly, I don’t have anything I really want to change. But this is less smugness than self-protection: revision is endless, and I want to write something new.
How did you come up with the title of your book and how do you think it reflects on the story’s overall message?
The Shape of the Eye came to me fairly early, maybe a year or two into the project. I mainly like the way it sounds, and am hoping readers will discover their own connections between it and the story.
What was your favorite part in your story?
I’m partial to the descriptions of life before Laura, particularly the scenes with Ellie in North Carolina; to the short section about driving across the country with Theresa; and to the description of “Your Child’s Heart Book.”
What was your favorite part in Amy Julia/George’s story?
 There are many things I like—Amy Julia’s honesty, her thoughtful and complex meditations on the religious significance of her experience, and her presentation of faith. She is devout and self-searching at once; to this outsider, at least, it seems that her faith is renewed by intellect, by questions.
I also very much like Amy Julia’s account of Down syndrome in the world: the way people struggle to make sense of it, to reassure, or to reassure themselves. Particularly powerful: the scene at her mother’s book club, and the scene in which a husband’s colleague urges her to get testing, and questions her testing decision.
What projects are you currently engaged in? Any new books from you on the horizon?
For now, I’ve returned to short forms—short essays, mostly, though I may go back to poems as well. I’m turning over a few ideas for a new book, but don’t have anything specific or firm enough to report.
What question have you always wanted to be asked in an interview? How would you answer that question?
“Now that you’ve won a MacArthur Grant, sold the foreign rights to your book in thirty-seven countries, and attained book sales more typically associated with hastily written novels about vampires, to which part of New Zealand will your family be moving?”
Do you have any questions for the reader?
How has the advent of the e-reader changed your reading habits? For the better, for the worse, or somewhere in between?
George, thank you so much. I am deeply honored to host this conversation on this blog.

Readers, by responding George’s question, you will be automatically entered in the giveaway for his book, The Shape of the Eye.

Thank you!