#justiceforethan: this is the call of the Down syndrome blogging community, and an independent investigation has been relentlessly called for.
These are our posts.
***********************************
Sunday, April 21, 2013
Blog Posts Regarding the Independent Investigation and Ethan Saylor
***********************************
Saturday, February 9, 2013
"Far From the Tree" by Andrew Solomon. Reviewed by George Estreich
On
the first page of "Far From the Tree: Parents, Children, and the Search for Identity
," Andrew Solomon writes that "loving our children is a
test for the imagination." Over the 976 pages that follow, Solomon
profiles the sorts of imaginative tests that most parents never face.
The chapter titles include "Deaf," "Dwarfs," "Autism," "Crime,"
"Transgender." He speaks to parents of musical prodigies, Rwandan
mothers who keep the children of their rapists, parents of children with
multiple severe disabilities. But as he discovers, "most of the
families described here have ended up grateful for experiences they
would have done anything to avoid."
," Andrew Solomon writes that "loving our children is a
test for the imagination." Over the 976 pages that follow, Solomon
profiles the sorts of imaginative tests that most parents never face.
The chapter titles include "Deaf," "Dwarfs," "Autism," "Crime,"
"Transgender." He speaks to parents of musical prodigies, Rwandan
mothers who keep the children of their rapists, parents of children with
multiple severe disabilities. But as he discovers, "most of the
families described here have ended up grateful for experiences they
would have done anything to avoid."
Solomon is a superb writer: elegant without fussiness, lyrical
without pretense. The families' stories are interwoven with extensive
research and bookended by Solomon's quest for identity, first as a gay
man seeking his parents' acceptance, and then as a father. As a result,
the book transcends both memoir and reportage: Solomon's story sheds
light on the families, and theirs on his. What results is the author's
"Song of Myself," a book containing multitudes. It is a gorgeous,
necessary, ambitious book. But it is also deeply flawed, and its flaws
undermine its positive message.
Solomon, despite his affirmative tilt, has an essentially tragic
vision. He favors saints, martyrs and stoics: Some of his highest praise
is reserved for Sue Klebold, the mother of Dylan Klebold, one of the
Columbine shooters. He calls her "eagle-eyed even when the views are
bleak," and writes, "Hers was a love as dark and true, as embracing and
self-abnegating, as Cordelia's."
He abhors sentimentality, but is often skeptical of happiness. In the
chapter on autism, he describes one mom: "I'd met so many families who
tried to look on the bright side of horrible situations that I found
something bracing in Nancy's brash assertions of misery and disgust, her
ability to say that if she'd known what kind of children she was going
to have, she wouldn't have had children." It is as if, being a reporter,
Solomon imposes a reporter's ethic on his subjects, valuing those who
observe their fate as if from the outside, even while wracked on the
inside.
I noticed this tendency throughout, but most of all in the chapter on
Down syndrome. I have a daughter with Down syndrome, and I've written
about her, so it's fair to say my antennae were up. Still, the stories
are troubling. The chapter opens with a profile of Emily Perl Kingsley
-- activist, mother of Jason (born 1974) and author of the well-known
"Welcome to Holland." That "modern fable," as Solomon calls it, has a
moral of acceptance: Kingsley explains that expecting a normal child,
then having a disabled one, is like booking a trip to Italy, then
landing in Holland instead. You learn to appreciate tulips and
Rembrandts.
It turns out that her inspirational fable springs from a
disappointment that now approaches bitterness. After years of dedicated
effort, her son is extraordinarily accomplished, but she refers to his
abilities as "trained seal stuff." She says, "You can have tulips and
windmills coming out your ears, but you don't ever get to the Uffizi,
and that's it." Karen Robards, another high-powered, dedicated and
loving mom, says of her adult son: "For David, I'd cure [Down syndrome]
in an instant; but for us, I wouldn't exchange these experiences for
anything." It's a zero-sum game of happiness: Both parent and child have
sacrificed, leaving wisdom tinged with regret.
Angelica Roman-Jimenez is more measured and accepting, but still
compares her daughter's birth to 9/11. "I couldn't stop the planes from
coming. I couldn't stop my illness [breast cancer] or her condition. You
can't stop the future." (Most parents I know don't think their child's
arrival was like cancer, let alone a terrorist attack, and are actually
OK with the whole Down syndrome thing.)
Part of the book's appeal is the extensive research. The endnotes
alone run to 120 pages, longer than "A River Runs Through It." In the
Down syndrome chapter, that edifice of fact is more impressive than
sound. There are minor errors: the IDEA legislation, which enables
children with intellectual disabilities to attend school, passed in
1975, not 1990; a long list of memoirs contains two books that aren't
memoirs.
More troublesome, though, are Solomon's assertions about what people
with Down syndrome are like. "People with Down syndrome are often warm
and sociable, eager to please, and free of cynicism," he writes. "Larger
studies indicate that many people with Down syndrome are also stubborn,
defiant, aggressive, and sometimes disturbed." But the two studies
Solomon cites are equivocal. They emphasize how little is still known,
how people with Down syndrome fare well compared with other children
with intellectual disabilities. One study notes relatively low rates of
true "aggression," like fighting. Higher rates are present only if
"disobedient," "argumentative" and "demanding attention" count. Which,
to me at least, sounds more spirited than aggressive.
I was curious about all this, so I emailed Solomon's description to
Dr. Brian Chicoine. He's the medical director of the Adult Down Syndrome
Center in Park Ridge, Ill., and his co-authored book "Mental Wellness
in Adults with Down Syndrome" is also cited in Solomon's endnotes.
Chicoine emailed back, cautioning against "broad strokes," but saying,
"While we do see some people that are aggressive and defiant, those are
not terms I would associate with Down syndrome. If one were to drive
through the parking lot of the local mall this Sunday while people are
scrambling doing last minute shopping, I think you could easily say that
aggressiveness and defiance are more common in people without DS than
with DS."
There's a great irony about "Far From the Tree": Despite the book's
sheer heft, Solomon's writerly gifts are most evident on the smallest
scale. He shines in the thumbnail portrait, the apt quotation, the
eloquent and balanced sentence. "Schizophrenia cannot be cured with
encouragement and love alone," Solomon writes, "but it can be hugely
exacerbated by neglect." A child musical prodigy, now grown, tells
Solomon, "I understand why my parents turned against me. We all hate
what we don't understand." In fact, some of the most memorable quotes
come not from parents, but from children -- which left me again at a
loss, because in the chapter on Down syndrome, Solomon doesn't talk to a
single one. Having heard so much of Emily Perl Kingsley's
disappointment, I wanted very much to hear what Jason Kingsley had to
say.
One of Solomon's stated goals is to illuminate the complex tension
between illness and identity. He writes, "I thought that if gayness, an
identity, could grow out of homosexuality, an illness, and Deafness, an
identity, could grow out of deafness, an illness, and if dwarfism as an
identity could emerge from an apparent disability, then there must be
many other categories in this awkward interstitial territory. It was a
radicalizing insight. ... Difference unites us." And yet Down syndrome,
for Solomon, remains more illness than identity, and so the people who
have it are missing. Their group characteristics are enumerated, but
their individual voices are silent. Given that Solomon talks to many
other affected members of different groups, the absence is conspicuous.
How we talk about disability matters. As Solomon points out,
"identity groups ... are gaining acceptance just as medicine threatens
to eliminate them." In a time when our definitions of illness are
changing as quickly as our ability to cure, treat and predict, we need
more than clinical descriptions; we need to know about life on the
ground. For this, Solomon's book is a valuable part of the conversation,
but it's far from the last word.
-- George Estreich of Corvallis is the author of "The Shape of the
Eye: Down Syndrome, Family, and the Stories We Inherit," the winner of
the 2012 Sarah Winnemucca Award for Creative Nonfiction at the Oregon
Book Awards.
Posted originally on December 29th 2012 in The Oregonian
Monday, October 8, 2012
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)
THANK YOU!
*****************************
Other relevant links:
- 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.
*****************************
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)
*****************************
Other relevant links:
- 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.
*****************************
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.
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.
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.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?
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.
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.
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/
*************************************
Meriah Nichols
Blog: With a Little Moxie
Site: meriahnichols.com
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?
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: http://www.withalittlemoxie.com/2012/08/from-grief-to-celebration-book-review-author-interview-giveaway.html
THANK YOU!
**************************************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/
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.
- only 3 copies left - for $13.99.
*************************************
Meriah Nichols
Blog: With a Little Moxie
Site: meriahnichols.com
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.
"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.
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!
(www.downsyndrometeenager.blogspot.com)
You'll grow from them, I promise!
***************
Reviewed by Amber Malmberg
Blog: This is My Life...And This is Joy!Wednesday, July 18, 2012
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.
, 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
--------------------------------------------------------------------------------------------
The Questions:Amy Julia's Awesome Blog: Thin Places
Amy Julia on Facebook
Amy Julia on Twitter
My Review: A Good and Perfect Gift
--------------------------------------------------------------------------------------------
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.
Subscribe to:
Posts (Atom)
ShareThis
