Wednesday, August 22, 2012

"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!
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 a week from today, August 29th:


Connect with Gary:
Blog: The Ordinary Life of an Extraordinary Girl
Facebook: (personal)
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.

Meriah Nichols
Blog: With a Little Moxie

Friday, August 10, 2012

"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

          Turn the Page

Wednesday, August 8, 2012

"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!
You'll grow from them, I promise!  

Reviewed by Amber Malmberg
Blog: This is My Life...And This is Joy!