Down syndrome Awareness Weekend Blog Hop: First Hop

October Down syndrome Weekend Blog Hop

Welcome to the October Down syndrome Weekend Blog Hop, in which we all try to raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness!
 
Those of you that are participating in the 31-for-21 Blogging Marathon, please select the one post you liked best that you posted in the course of the week and share that on the Hop.
 
For those of you that are not participating in 31-for-21, please select either a new post or a favorite past post and share that.
 
Blog Hop will be open until Sunday, October 7th, 11:59 Pacific. Blog Hop will be archived on the T21 Alliance and Down syndrome Blog Sites (links below).
For more on what a Blog Hop is, for optional prompts and other information, click HERE

HOP ON!
 
Blog Hop Code:
There will be a link "get code" at the bottom of each blog hop - it would be great to click, copy and paste the code to your own blog. When you do that, you yourself become a host for the Blog Hop. You help share the diversity of expression, thought and belief in our writing community when you include the voices of everyone else in the Hop.

TO ADD THE HOP CODE:
Just copy and past this:
 
<!-- start LinkyTools script -->

<script src="http://www.linkytools.com/basic_linky_include.aspx?id=164825" type="text/javascript"></script>

<!-- end LinkyTools script -->
 
Into the HTML view of your post. Switch back to visual. If you don't see it immediately, that's okay. It's usually only visible after you've made it live by posting it.
 
Blog Hop Button:
Share this Hop! The more the merrier! (note: it works in the sidebar, not the main page - but if you have issues, email me)

<a data-cke-saved-href="http://www.withalittlemoxie.com/resources/t21-blog-hop" href="http://www.withalittlemoxie.com/resources/t21-blog-hop" target="_blank"><img data-cke-saved-src="http://www.withalittlemoxie.com/wpcontent/uploads/2012/09/bloghopoct121.jpg" src="http://www.withalittlemoxie.com/wpcontent/uploads/2012/09/bloghopoct121.jpg">

THANK YOU!
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Other relevant links:

• Down syndrome Blogs
• T 21 Writers Alliance - The International Alliance of Writers for Down syndrome

- facebook page
- informal facebook group page
 
 31-for-21:
31 for 21 is a daily blogging endeavor to raise awareness about Down syndrome. To participate and/or learn more, please visit 31-for-21 at Big Blueberry Eyes
 
From NDSS:
The National Down syndrome Society has created a Blogger Guide - which includes links to a preferred language guide, resources and lots of suggestions for doing more - and springboarding to greater action. Check it out HERE.
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"From Grief to Celebration", by Margaret "Gary" Bender, Reviewed and Interviewed by Meriah Nichols

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!

 

 

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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: http://www.withalittlemoxie.com/2012/08/from-grief-to-celebration-book-review-author-interview-giveaway.html

 

THANK YOU!

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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.

 

 
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Meriah Nichols
Blog: With a Little Moxie
Site: meriahnichols.com
 

 

 

"The Shape of The Eye" by George Estreich. Reviewed by Lisa Morguess

Almost four years ago, I gave birth to my sixth child, a baby boy who took my breath away with his otherness. My husband and I learned within days of his arrival that our son, Finn, had Down syndrome, and we set upon a path we had never imagined. In the time since Finn's birth, as I've searched for wisdom and connection, I have read many accounts by parents who are also raising children with Down syndrome. None of those stories, however, have resonated with me like George Estreich's new book. The Shape of the Eye tells of raising a child with Down syndrome, but also of family, writing, the vast landscape of parenting, and most of all, what it means to belong.

When Estreich and his wife, Theresa, welcomed Laura, their second daughter, into the world on a sunny day in February 2001, they began a journey, both frightening and illuminating. In their newborn daughter's face, the doctor sees ambiguity:

"I notice the eyes are slightly almond-shaped."

"My mother is Japanese," Estreich replies.

So begins an exploration of genetics, race, inheritance, and family -- the provocative yet ordinary elements of this book, which won the 2012 Oregon Book Award for Creative Nonfiction. Within two weeks of Laura's birth, a genetic test confirms what doctors suspected: Laura has Down syndrome. Furthermore, her condition is complicated by a severe heart defect, which would require surgery within months of her birth. Estreich writes, "Nobody, so far as I know, finds out that a newborn child has Down syndrome, shrugs, and returns to decorating the nursery. We were undone by the news for a long time."

Estreich grieves for the "phantom" child, the child he'd imagined through her nine-month gestation. He struggles over how to tell people of Laura's diagnosis, and he worries about the future. Would Laura go to school? Would she have friends? Would she need assistance with everything she did?

Seeking solace, Estreich begins to gather information and learn all he can about Down syndrome. He consults sources both popular and obscure, parenting guides, medical texts, and scholarly articles, and asks questions often asked by parents in this situation: What is Down syndrome, both medically and clinically? How will it manifest in my child, and in our family? Following this initial research, he writes:

There were, it seemed, two kinds of stories told about my daughter. In one, she seemed to be a developing child. In the other, she seemed not even human. She was a defect, a tragedy, an abnormality. I did not see how she could be both.

Estreich encounters these contrasting stories of children with Down syndrome throughout the literature, and decides to delve deeper, to ask larger questions. He explores where perceptions of Down syndrome originated, and how they have been shaped over generations. This research, of course, leads him to John Langdon Down, the man who first categorized people whose outward characteristics are now associated with the syndrome. Down worked in late nineteenth century England, and ran the Royal Earlswood Asylum for Idiots and Normansfield, both institutions for people with developmental disabilities. Down believed that the "idiots," as they were called at the time, housed in these asylums were, in fact, products of racial "degeneration" in utero. They did not resemble their parents, Down reasoned, but they did resemble each other. From this observation, he coined the term "Mongolian idiots," and thus arose the spurious links among race, inferiority, and particular physical characteristics. These links held strong for nearly a century, until scientists learned of chromosome pairs and of trisomy 21 (a tripling of the twenty-first chromosome).

Estreich weaves this fascinating social history into his own family story. Integral to both narrative threads is the concept of inheritance. We inherit genetic material and physical traits, but we also inherit ideas, fears, expectations, and misconceptions. How have stories and theories about Down syndrome affected the way we see this condition? How, Estreich asks, has his own upbringing shaped him as a person, husband, and father? How have his parents' histories informed their perceptions and the stories they have passed on to their children and grandchildren?

He concludes, wisely, that enlightenment is an ongoing process. It is easy, today, to dismiss nineteenth-century theories as wild and erroneous, yet, Estreich cautions, we should not be too complacent in our contemporary perceptions of Down syndrome: "So we are imperfect and struggling too, making sense of the meanings we inherit -- an effort that's difficult, messy, necessary, and still unfinished."

The Shape of the Eye is meticulously researched, introspective yet not sentimental, and written in absorbing and rich prose. An English professor and poet, Estreich left his academic career to raise his two daughters, Ellie, his eldest, and Laura. Accordingly, he tells his family's story from the still-unusual perspective of an at-home dad. Estreich's gift for writing is extraordinary, his prose wry and evocative. I found myself re-reading many passages, rolling them over in my mind, savoring and absorbing each word. For instance, on day-to-day parenting, he writes:

There is an irritable exhaustion specific to primary caregivers, in the late afternoon, when you are sleep-deprived, caffeine has lost its power to revive you, and you have not had childcare for days. You have already played Chutes and Ladders and Hi-Ho! Cherry-O and Masterpiece, and each time it has taken more time to find and set up the game than it has to actually play it, and somewhere beneath the increasingly snappish exchanges between you and your children, your brain is sinking to the benthic depths of four o'clock, where the last few caffeine molecules, like phosphorescent sea-creatures, are slowly winking out.

Over months and years, Estreich realizes, as many parents of children with Down syndrome come to realize, that life goes on, and that Down syndrome is neither tragedy nor blessing, but one of many possible variations in an ordinary life. All parenting involves an adjustment in expectations; no parent receives exactly the child they anticipate. Estreich discovers that raising a child with Down syndrome does not mean the end of "normal" family life, nor does it mean living under a perpetual cloud of bleakness. Laura grows, as children do. She makes friends, goes to school, confounds her parents and elicits their pride. Laura's struggles and achievements prove no more or less profound than those of any child, and raising her proves not so different, after all, from raising her older sister, Ellie.

Our second daughter taught us the responsibilities we had accepted when we chose to have our first. Laura's chromosome count taught me that every child is a genetic risk; her heart defect taught me that the risk is mortal; and years later, remembering an infant I did not know, I learn -- again -- that it is not only the chromosome, but our response to it, that shapes the contours of a life. Every tube, every wire, the violent nurture of surgery and the gentler nurture of feeding therapy, all working towards the clear pronunciation of a word: these hinged on the belief that her life was worth saving in the first place, then nurturing to its fullest potential. Everything we have done, teaching her to eat, to speak, every act of ambassadorship and interpretation, presumes the uncomplicated belief that her life is radically, democratically valuable. If we did not, on some level, believe that, we would not even have taken her home.

Now, nearly four years after my own son was born with Down syndrome, I too have moved so far beyond the fear and grief I first experienced that, looking back, those days seem dreamlike. As Estreich says of Laura's diagnosis, "For a long time, I thought we had learned a difficult fact. But we were really at the beginning of a conversation."

Finn, now an active, determined, moody, mischievous, inquisitive preschooler, has changed and expanded our family in ways similar to our other children, as well as in ways we had never anticipated. By tapping into our compassion and tolerance, and broadening our perceptions about our fellow human beings, Finn, like Laura, is merely and extraordinarily a child.

Lisa Morguess

blogs: Life As I Know It

          Turn the Page

"From Grief to Celebration", by Margaret (Gary) Bender, Reviewed by Amber Malmberg

After blog-following some other moms with children who also have Down syndrome I came across the blog of a mom who's in an entirely different stage of life than me.  She was blogging about hunting for colleges, and her daughters independence.  She was blogging about her daughters accomplishment, and about everything I dream about for my little Royce.  Her blog was more refreshing for me than any others.  It was of hope, accomplishment, success, guidance, and joy.  

She has also published this book, From Grief to Celebration .  It's an easy 74 page read that allows the reader to experience through her eyes.  I found it honest and uncensored, helpful, personally un-relatable at times, yet completely relatable at others.

The book is broken into 11 "verbs".  First, Grief.  Second, Research.  And then: Incorporate, Promote, Include, Understand, Advocate, Expect the Best, Healthy Skepticism, Plan, and then Celebrate.  

Honestly, the mere word "grief" put a bad taste in my mouth.  I hated hearing it.  But you know what?  I've come to a place where I can finally appreciate other peoples reactions, and their honesty therein.  

I can relate to Bender as she states "Why did the mood in the delivery room resemble a funeral parlor instead of the party-like atmosphere that was present after the birth of my firstborn"(Bender,3).  Only she knows!  Only her and other moms who also have children with Down syndrome know that feeling.  
       
If I could change anything about this world, I would start with the way the hospitals are trained to react. Where were my smiles?  Where were the congratulations?  Where was Royce's party?  You can be dang-sure we celebrated HARD CORE by the way!  So Celebration would be my first!  I am also very moved and grateful for how she describes her reaction, her husbands reaction, followed by saying "Although we were together physically, I know for the few weeks following Alex's birth, we were apart emotionally.(Bender, 10).  Everyone reacts differently.  And each is right for that person.  That was a lesson I had to learn, and I deeply appreciated her sharing this truth in her book.   

Bender and I reacted differently in the second "verb"as well.  She shares how "As soon as possible after we learned Alex had Down syndrome, we began our research"(Bender, 17).  After Royce was born we were given reading material by a social-worker, given books, invited to blog-follow, etc.  I remember not looking at most anything for a long time.  He was a baby.  He was a BABY!  And I knew I had a lot of time to do all of that.  And naturally, I slowly read-up as I desired, and about what I desired.  I was very selective. 

I loved everything she shared under the "verb" of Advocate.  She talks about advocating for your child, but most importantly, giving your child the skills to advocate for themselves.  LOVE, LOVE, LOVE that!  "When Alex feels self-assured, she succeeds in advocating for herself"(Bender, 52)."I'll store that one in my memory bank!  

The "verb" Expect the Best was also full of great and relevant insight for me.  "I expect the best, but have learned to adjust as needed.  This is especially true when we're in a valley, or experiencing a temporary lack of growth"(Bender, 57).  This hits home for me.  I too expect the best.  I passionately don't think my Royce is "retarded".  I think he's "developmentally delayed", and there's a very distinct difference to me.  That doesn't mean I live in denial, it means I "expect the best, but have learned to adjust as needed"!  I also love her attitude.  She shares how "plateaus are simply resting places for her to take time to catch up"(Bender, 57).  I'll have to pin that one!

The "verb" Practice Healthy Skepticism was another great section that delves into her daughters accomplishments, and the lie of one's IQ.  Loved every word.
And most refreshing of all was her and her husbands shared desire to reach that "empty-nesters" stage.  Their ultimate goal is to help Alex become independent- as every parent desires for their children, and as we desire for Royce.  

Read it…and follow her blog too!
(www.downsyndrometeenager.blogspot.com)
You'll grow from them, I promise!  


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Reviewed by Amber Malmberg

Blog: This is My Life...And This is Joy!

Author Interview: Amy Julia Becker

This is the second 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. Both interviews were conducted via email with Meriah Nichols, blogging at With a Little Moxie.

More on Amy Julia Becker

Website: www.amyjuliabecker.com
Amy Julia's Awesome Blog: Thin Places
Amy Julia on Facebook
Amy Julia on Twitter

My Review: A Good and Perfect Gift
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The Questions:

1. 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?

The genesis of A Good and Perfect Gift was a journal. After Penny was
diagnosed with Down syndrome two hours after birth, the easiest way for me to
try to figure out what I was thinking and feeling was to write about it. I sometimes
felt like a little kid again because my mother was helping out a lot and she would
send me to my room and say, “Take a nap, or write.” She knew what I needed.
About once a month I would post an edited version of a few journal entries on
a private blog intended only for our friends and family. In time, I realized that
parents who didn’t have children with special needs nevertheless resonated with
many of the hopes and fears and doubts and joys I was experiencing. By the
time Penny was two, I felt compelled to write about the whole experience in a
more public way, in hopes that it would prompt questions and reflections about
the goodness of life and the challenges and rewards of parenting.

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

I think of A Good and Perfect Gift as a meditation on the nature of love,
particularly parental love, I suppose, but really love in general. So much of our
culture is built upon the assumption that our identity comes from our abilities, and
this assumption is destructive to all of us because it implies that we are only so
valuable as what we can achieve. But if our identity is based upon the fact that
we are loved and that we love in return, it enables us to see one another as gifts
and to give and receive with humility and gratitude. I hope readers come away
from this book with greater freedom to love and to be loved.

3. You have read each other's books; in what ways do you think your books
are both similar and different?

The Shape of the Eye is broader in scope than A Good and Perfect Gift. For one,
Laura, George’s daughter, is older than Penny, so his story spans more time
and perhaps demonstrates greater wisdom because they have had more time
together. George also weaves in his own relationship with his parents more than
I do. Laura’s medical challenges in the beginning of her life were very different
than Penny’s, and the reality of Laura’s physical difficulties early on led George
to different places as a result. But both books attempt to simply tell a story of
a family. I hope both of them do so with beauty and integrity. I know George’s
does.

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

Writing about the beginning of Penny’s life was particularly difficult. I was working
on the book years after those early days, and I had resolved so many of the
emotions. The fear and grief and anger was gone. It was tempting to make
editorial comments, to assure the reader that I wouldn’t feel like this forever, or
even to wonder out loud how I could have been so upset. But of course I needed
and wanted to tell a true story, and the true story of my life as Penny’s mother
includes the weeks and months of confusing emotions after her birth.

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

There’s one passage that I often read when I’m talking about the book in public.
It happens when Penny was five months old and some high school students
come to our house and say, “You have the perfect life.” From there, I go on
to think about the meaning of perfection, the ways in which our life doesn’t
conform to cultural standards of perfection, and what it might mean to think about
perfection differently. In retrospect, I wish I had written that passage with a little
more clarity. One of my struggles since I was a little girl has been perfectionism,
which I now see as the attempt to pretend to be perfect. Every perfectionist
knows that perfection (by any measure) isn’t possible, but the pretense of it is. A
child with Down syndrome can’t pretend to be perfect. Penny’s presence in my
life knocked the perfectionism out of me, which was incredibly jarring at first, but
also incredibly freeing over time. If I were writing it over, I’d edit that one section
to be a little more clear about this perfection stuff.

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

I’m terrible with titles. I had originally named the book “Just Penny.” I liked the
sentiment—there’s a scene in the book where I realize “she’s not our daughter
with Down syndrome. She’s just Penny”—but I didn’t love the way the words
sounded out loud. They also have an unintended double meaning that she’s
both “Simply Penny” and “Righteous Penny.” So my agent and I spent a few
days brainstorming, and she ultimately came up with the title A Good and Perfect
Gift. I love her choice because it mentions themes that run throughout the book
as I consider what makes life good, as I discover a new meaning of perfection,
and as I come to understand what it means to receive Penny as a gift. It’s also a
reference to a verse from the Bible: “Every good and perfect gift is from above,
coming down from the Father of the heavenly lights, who does not change like
shifting shadows” (James 1:17). In this way, the title also reflects my growing
understanding throughout the book that God has a purpose in Penny’s life, and in
ours.

7. What was your favorite part in your story?

It’s hard to pick a favorite part, but I laugh out loud every time I read the part
where I’m telling my husband Peter that Penny’s hearing might be compromised
and she might have trouble hearing the “sh” sound. He responds, “Good thing we
didn’t name her Sheila.”

8. What was your favorite part in Amy Julia/George's story?

Again, hard to pick a favorite part of George’s beautiful book, but I find myself
returning again and again to one paragraph:

A syndrome means, at root, a 'running together.' When you have a child, it all
runs together: the heart defect, the eyes, the way her voice sounds, the name
of the speech therapist, the worries over the future, the joys of discovery, the
sliding sense--slow, quiet, enormous, an avalanche in the skull--that different is
not as different as you thought. The genes produce the child, who lives a story,
whose story is bound up with yours. So reducing a child to a heap of medical
fragments is, for a parent, a complicated and dissonant act. It is a necessary
fiction, a story one tells only in order to move on.

George states it perfectly, and his words have informed my own thinking about
how a diagnosis is only the beginning, and perhaps even a false, if important
beginning, to understanding a child as a full human being with an interwoven
story.

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

My biggest project at the moment is moving our family of five to Connecticut!
With that said, I am working on a short ebook about prenatal testing that will
come out in September. I have two books knocking around in the back of my
head, but it will be a few months before I have time to sit down and listen to what
those ideas have to say.

and...
10. Do you have any questions for the reader?

What is one gift that your child has brought into your life?

-----------------------------------------------------------------------------
Thank you, Amy Julia. I am honored to have you here.

From Grief to Celebration by Gary Bender, Reviewed by Megan Landmeier

From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome by Gary Bender, Reviewed by Megan Landmeier
This post first appeared at My Stubborn Little Miss.

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When Gary (Margaret) Bender emailed me and asked me if I'd like to give away a copy of her book on my blog, I was excited.  I'd read a few reviews on this site, and although I contribute here, I hadn't picked up Gary's book yet.

What first struck me about From Grief to Celebration was the fact that Gary is the parent of an older child with Down syndrome; her daughter Alex was 17 at the time the book was written.  While I loved Bloom and A Good and Perfect Gift, both books were written by parents of younger children.  Gary offers the distance and perspective years can bring.  The book is a fast read, and I read it on a flight as Ellie napped in the Bjorn.

From Grief to Celebration is based around ten verbs that Gary and her family contributed in processing Alex's Down syndrome diagnosis.  I appreciated Gary's story of receiving the news that Alex was not going to be the baby she expected, although that story is now a familiar one.  Gary's writing style is tight, and she gets to the point without becoming dry.  Her descriptions of advocating for Alex encouraged me, because I'm grateful for moms who have gone ahead of me to promote inclusion.

My favorite passage of the book was something that surprised me.  While I desire for Ellie to be included with her typical peers, I want her to find her place in the special needs community as well.  I want her to thrive.  In the chapter on "Include," Gary writes:

"What I didn't believe at the time, but know now, is that Alex shines when she's with other people with disabilities.  She can interact equally, both socially and competitively.  She feels genuine friendship, pride, and success."

Another mom of a child with special needs that I know has mentioned her daughter having "many circles," and I think Alex's social life as described by Gary reflects a bit of this.  School, general education, special education, Special Olympics, our local Down syndrome group - I want Ellie to find her place in each.

I would recommend From Grief to Celebration to any parent of a child with Down syndrome looking for a memoir that takes them farther down the road, beyond early childhood and into adolescence.

******************
Megan Landmeier
Blog: My Stubborn Little Miss

"Bloom" by Kelle Hampton. Reviewed by Meriah Nichols

"Bloom" by Kelle Hampton. Reviewed by Meriah Nichols
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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 Estreich, Amy Julia Becker, Martha 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.




Meriah Nichols
Blog: With a Little Moxie
Website: meriahnichols

“From Grief to Celebration”, by Margaret (Gary) Bender. Reviewed by Lisa Nicholson

I have “met” many parents of children with Down syndrome over the 5 or so years I’ve been part of this great blog community. The majority by far have been parents of newborns or children younger than my own 12 year old. That has a lot to do with the explosion of communication and networking that the internet has created and I have to say that I’ve envied how easily a new mom can just hop on the internet and find out all she needs to know about bringing a baby into the world with Down syndrome. However, finally I found Gary Bender, who’s daughter Alex is 7 years older than mine (and who just graduated from HS) through her blog The Ordinary Life of an Extraordinary Girl.

To read about a child older than my own, out into the future that felt so intimidating, was a
remarkable moment and gift.

Then Gary did something extraordinary herself. She took the content from her posts
and compiled them into a book about her family’s journey and called it From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome .

This story goes deep into the process of acceptance and beyond, “carrying the message of
promise to the next group of parents”. Each chapter takes a step towards the celebration
that many families will discover as they move through the transformation that is having
a child with 21 chromosomes. She uses 10 verbs (and a bonus) to provide a pathway
of success and to describe, not just the inner journey but how her family carved out
their niche in their rural community. Healthy Skepticism is one of my favorite chapters
where “can’t is unacceptable”. She doesn’t skimp on the challenges that greet us as our
children move into adulthood but she shares a perspective of deep possibility that is
encouraging.

Gary is one of the pioneers, a generation who began raising their children in the public
school system under the umbrella of inclusion, with the philosophy of early intervention-
both things that some of the new generation of mothers often take for granted enough to
challenge them to go to a new level. Many people now have written of their journey but
few with such simple, direct grace and wisdom. Gary has not been on the Today Show or
Oprah and she markets her book herself, more evidence of her spirit and determination. I
would highly recommend this book as essential reading.

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Lisa Nicholson

Author Interview: George Estreich + Book Giveaway

This is the first of a two-part series on the blog, With a Little Moxie - 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 on With a Little Moxie 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:

Website: www.georgeestreich.com

Reviews of his book (on With a Little Moxie) by Lisa Morguess and Alison Piepmeier

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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?”

and...
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? 

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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. Please visit With a Little Moxie before midnight on 6/15 to your comment and enter.

Thank you! 

- Meriah Nichols