"Sun Shine Down" by Gillian Marchenko. Reviewed by Stephanie Sumulong

"The sun will shine again" was a quote that author Gillian Marchenko cut out and taped up in her home.  It came from an email a friend sent to her shortly after the birth of her third child, Polina (Polly for short), who was diagnosed with Down syndrome.

Gillian's memoir chronicles her journey to acceptance of her new role in the world of special needs, Down syndrome, Early Intervention, and therapy appointments.  She also realizes along the way that her daughter is at first a baby, not a diagnosis.

What I found most interesting about Gillian's memoir is that she had the added perspective of giving birth to her daughter in the Ukraine where people with disabilities essentially do not exist.  The beginning of the book tells of a cold pediatrician that basically tells Gillian and her husband that she will understand if they want to leave the hospital without their child and sign their rights away.  This was in 2006 and that scared me:  the mind set in many Eastern European countries is still this way.

Gillian also bares her soul by the telling readers how she coped with her new daughter's existence and while it wasn't the way I personally coped, I know many moms have coped in the same way in order to shut off their feelings and the depression that can often follow an at birth diagnosis that no one was expecting.  What I liked most about this memoir is that she was so honest and upfront about her feelings; there was no hiding behind the words.  It is a very raw and emotional memoir and it is very real.

Eventually the sun would shine down again and the realization that Polly is just like her other daughters (and, as her husband Sergei says, "looks just like a Marchenko") would sink in for Gillian, which happens for most other parents who have a child with Down syndrome.

This is definitely worth a read by all parents, not just those who have a child/children with Down syndrome.  I think Gillian's thoughts about trying to deal with a situation she didn't ask for and trying to maintain an outward happy persona are things that many people can relate to.  Two thumbs up!

(3) for 21: A Blog Hop

This monthly blog hop is a community project. The code is set up so that everyone can participate by adding their link to their post - and host if they want, by adding the code to their own post! So, just follow the instructions through the linky tool (below)

 (3):

One truth (about Ds/our lives with Ds)
One tip (- information on something related to Ds/raising a child with Ds/or just parenting in general)
One photo

3 on the 21st: A Blog Hop

(3) on 21:

This is a community Blog Hop: (3) on 21: Links are open till 8/28

One truth (about Ds/our lives with Ds)

One tip (- information on something related to Ds/raising a child with Ds/or just parenting in general)

One photo

( if you want the button, just copy and paste the code below into the HTML version of your post, or within the widget/gadget area of your sidebar)

<div align="center"><a href="http://www.downsyndromeblogs.blogspot.com" title="(3)on21" target="_blank"><img src="http://www.withalittlemoxie.com/wp-content/uploads/2013/07/photo-11.jpg" alt="(3)on21" style="border:none;" /></a></div>

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(3) on the 21st: a Writers for Down syndrome Blog Hop

(3) on 21:

This is a community Blog Hop: (3) on 21: Links open until 7/28

One truth (about Ds/our lives with Ds)

One tip (- information on something related to Ds/raising a child with Ds/or just parenting in general)

One photo

( if you want the button, just copy and paste the code below into the HTML version of your post, or within the widget/gadget area of your sidebar)
<div align="center"><a href="http://www.downsyndromeblogs.blogspot.com" title="(3)on21" target="_blank"><img src="http://www.withalittlemoxie.com/wp-content/uploads/2013/07/photo-11.jpg" alt="(3)on21" style="border:none;" /></a></div>

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"Up Syndrome" by Megan Abner. Reviewed by Stephanie Sumulong

Recently I received a copy of a new book called "Up Syndrome:  It's all about the attitude" by Megan Abner.  I was excited to get my hands on this book for one main reason--an adult with Down syndrome wrote it!  Yes, you read that correctly:  a 30 year old woman named Megan who has Down syndrome wrote this book.  These are her words, thoughts, and feelings about what it means to have Down syndrome.

First it should be stated that the book is unedited--a friend of hers took her journals and typed everything out the way she wrote it.  Therefore punctuation, word usage, and grammar are not changed or fixed in any way.  That didn't bother me; in fact I preferred it that way because it really made me think about Megan and how she sees life.

Secondly it must be noted that Megan doesn't use the words Down syndrome; she believes that "down" makes it sound extremely negative and so instead she uses Up syndrome and she encourages others, especially her family, to do so too.

Thirdly, while this book is written by a person with Down syndrome and she does tackle some subjects related to Ds, the message from this book applies to anyone.  Life is all about your attitude and how you want to live it.  It's clear that her attitude about enjoying life and its challenges has made her the person she is today.  She says as much on pg. 4:  "It's all about what you think of yourself, there's nothing else, just put yourself into it.  Don't let anybody make you feel inferior".  I think that's a message that anyone can relate to, regardless of their connection to Down syndrome.

If I could sum up this book in one word, it would be pride.  Megan has a lot of pride about who she is and what she does.  She says simply how smart she is, how much she enjoys driving, how she loves putting words onto paper, how fantastic she feels about writing a book, how much she loves her jobs.  I don't think I've personally ever felt that way about myself and even if I did, I never said it aloud.  She not only says it, but she means every word of it and wrote every word of it down.  Her family seems to take a lot of pride in Megan too, based on the real relationships she has with her extended family--serving as maid of honor for her cousin's wedding--and how they treat her--she goes on adult vacations with her family, drinks beer and wine, and discusses hard topics like her grandfather being ill and wishing to see her before he dies.

When Megan discussed going to school, I was worried about her experience.  I realize that Megan is more my contemporary than my child's; she is nearly 30 years old and I'm 35--when she was in middle school, I was attending high school.  But I'm also a realist and I know that public schools and special education programs still have many miles to go before they truly educate everyone and educate them well.  It definitely saddened me when she talked about not having any friends and no one wanting to sit with her at lunch.  I am terrified of sending Owen to elementary school.  I am so worried that with his lack of talking and communication he will be limited in who will play with him or want to be his friend.  When someone like Megan, who writes and communicates well, has problems making friends, I have to wonder what will become of my boy.  And worse, will he ever be able to tell me if someone made fun of him or excluded him?

One of my favorite parts of her book is what she wants to tell every pregnant woman about having a child (any child, not just those with Up syndrome, as she says):  she wants them to know what her mother did for her (like homeschooling her in middle and high school when it became clear that the district wasn't doing its job), talk to these women about her thought process and how smart she is, and give kids an education.   She hopes that parents will teach their children to have open minds which would make people look at Up syndrome most positively.  An open mind about people who are different than you..........what a wonderful concept!

This book for me held a promise that even if someone has a disability s/he can still do great things.  Owen will soon be 4--too soon to tell what his future will be.  But I think the best thing to know as his parent is that he DOES have a future--it may not be the one that I dreamed about before he was born, but it will be HIS, whatever he decides to do or to be.  Megan states that "people with different abilities can make the world fabulous"; she's doing it her way and I know Owen will do it too.

You can get your own copy of this fantastic book here

Reviewed by: Stephanie Sumulong
Blog:  The Sumulong 3
Page:  Facebook: The Sumulong 3

Blog Posts Regarding the Independent Investigation and Ethan Saylor

#justiceforethan: this is the call of the Down syndrome blogging community, and an independent investigation has been relentlessly called for.

These are our posts.

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"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."

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