book review


Rae Hower reviews the book, You’ll Miss Me When I’m Gone, in this post.

You’ll Miss Me When I’m Gone, by Rachel Lynn Solomon

You’ll Miss Me When I’m Gone is about twin sisters whose mother has Huntington’s disease.

It takes place during their senior year of high school. The sisters must decide whether to take a genetic test to learn if they will also develop Huntington’s disease and how they will deal with the results. Their dynamic family relationships grow and change throughout the story.  Meanwhile they are learning about love and pursuing their dreams, one in music and the other in academics.

This is a great book!

I really enjoyed it and found it very engaging. It deals with a lot of deep issues without being overly heavy, which I really appreciate. It is considered a young adult book; I thought it was pretty intense for that genre in terms of sexuality and psychological issues (including suicidal ideation).

The book is a coming of age story (two coming of age stories intertwined), and the young women grapple with their complex identities, including religion, sexuality, passion/purpose, intellect, role in the family and health.

I don’t know how accurate the book is in terms of describing the symptoms and experience of Huntington’s disease.

It is always good to be reminded that while books and movies can be great at conveying a personal experience of living with illness and/or disability, they are not where we should go to learn specifics about those disabilities or medical issues.

Has anyone with Huntington’s reading this post read the book? What do you think about the way it is portrayed?  

The story is told from the perspective of the sisters observing and caring for their mother, although there are a few places where the mother shares her own feelings and thoughts about it.

The story is not focused on disability empowerment/advocacy, but on the sisters figuring out who they are, and their family’s Huntington’s disease is an important part of their identities. While not overly negative, the book could have been more positive about living with Huntington’s.

There are times, when the young women are considering the possibility that they’ll develop symptoms, that they focus on all the things they want to do before the age when symptoms would usually start, as though all fulfilling life will stop at the appearance of the first symptom.

I think this is probably a pretty realistic portrayal of how the teenaged mind works, but I wish the book would have portrayed them realizing that life with Huntington’s disease would be different but still meaningful.

A lot of their mother’s experience is described in terms of what she can no longer do, rather than how she adapts and still enjoys life (like, there’s a lot of emphasis on how she has to retire from the teaching job she loves and not much mention of how she has more time for knitting, a hobby she also loves).  

On the other hand, perhaps someone with Huntington’s disease would say that the book sugar coats how hard it is—I don’t know. Either way, the young women are believable as they struggle with the realities of their mother’s symptoms and the possibility that they will experience them in the future, and it is easy to feel empathy for them as they wrestle with how it may affect their lives. They are flawed, like we all are, but you root for them.

Overall, I highly recommend the book!

I’d really like to hear what someone affected by Huntington’s disease thinks about it.

rae: a woman with dark hair is smiling at the camera. her skin is light

Rae is a mom of three whose eyes were opened to the beautiful diverse disability community (that she previously ignored!) when her daughter was diagnosed with Down syndrome. She is learning to be an ally by listening to people with disabilities and reading/watching their books, blogs and movies, and by going to as many trainings as she can. Rae is a part time international public health practitioner who likes yoga, loves the beach, and used to cook (she never cleaned). She occasionally dabbles in textile arts.

Rae Hower reviews the book, Rare is Everywhere, in this post.

Rare is Everywhere

Rare is Everywhere is a children’s book about unusual animals like blue lobsters, spotless cheetahs and white tigers.

The point, according to the book jacket, is to teach children “about diversity and how our differences make us spectacular.” I love this!  And I love that proceeds from the book are donated to the Rare Disease Foundation. The pictures are BEAUTIFUL and there are interesting facts about each of the featured animals and a page of jokes at the end.

Overall, it’s a good book!

I think it could have been a bit more explicit in the messaging and I thought the rhyming was a bit forced and cheesy at times, but we liked it!  

I didn’t LOVE it when I first read it because I thought it fell short of making the connection from unusual animals to the human experience. The intended message seems to be that physical differences and disability are part of the spectacular diversity of humans, just like these cool animals are part of the spectacular diversity of the animal family, and there are lots of different kinds of animals with rare features so of course there are humans with rare characteristics too.  

This awesome message comes across pretty weakly, in my opinion. To be fair, my eleven-year-old got it right away, but my seven-year-old didn’t make the connection on his own—he was focused on the cool animals.

I like that the book defines rare as being “different in a special way,” and it does say, at the very end,

So if you ever feel different, like a white spirit bear, You don’t have to worry, because… Rare is EVERYWHERE!

This is great for all kids to hear, but especially those with a physical difference/disability. I wish it went a bit farther to say, “if you see a kid who seems ‘different,’ like all of these amazing animals, be friendly!” but I’m still glad it’s part of our book collection.


rae: a woman with dark hair is smiling at the camera. her skin is light

Rae is a mom of three whose eyes were opened to the beautiful diverse disability community (that she previously ignored!) when her daughter was diagnosed with Down syndrome. She is learning to be an ally by listening to people with disabilities and reading/watching their books, blogs and movies, and by going to as many trainings as she can. Rae is a part time international public health practitioner who likes yoga, loves the beach, and used to cook (she never cleaned). She occasionally dabbles in textile arts.

Summary of the Story

Good Kings Bad Kings  story is about teenagers with disabilities who live in an institution in Chicago, and the people who work there. It’s told in person-first accounts. It follows the lives of the residents and workers for the period of about a year, with backstory.

What Was Great

Good Kings Bad Kings was a well-written story. It moved through the character’s lives with depth, interest, empathy and balance. It gave us a snapshot of a myriad of lives, and what that looked like across cultural and economic lines.

It told a powerful story of lives lived in an institution, of social imbalances, injustice; of the horrors of being essentially prisoned by the system.

What Was Not Great

The stories speak in person-first voices, which means that it spoke in person-first voices of black and latino characters, accents and all.

I wasn’t crazy about that. I really don’t like cultural or racial imitation (or whatever it’s called when you pretend to have an accent and be someone you aren’t).

Besides that, the stories can be absolutely wrenching. They are made worse by the knowledge that this type of thing is real, and with the current administration pushing for a stronger return to this type of system.

Who Should Read This Book

People who like books told in short stories, person-first, will enjoy Good Kings Bad Kings. People who would like to learn more about the system of institutions in America, and how it makes systemic/economic “sense” will like this book.

It’s a well-written tome, with depth that will leave you thinking of the characters long after you have finished it.

Hey! This is just a really quick post to let you know that The Lit League is voting on the next book for us all to read (and talk about).

Voting is going on over on GoodReads:

It’s anonymous and everyone is welcome.

Come on over.

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I recently read “Hunger: A Memoir of (My) Body” by Roxane Gay for the Lit League Book club.

I was the one who chose that book, because I had seen enough friends with disabilities posting on Facebook about how powerful they thought the book was, what a short read it was, and how much they loved it for the intersections they found with disability. With those words (“short!”, “powerful!” “intersections!”), I thought it sounded perfect for the fledgling book club.

The good:

Hunger does have intersections. Lots of ’em. It intersects race and culture pretty consistently. It also touches on class and privilege. The book is loaded with pieces that you can directly apply to experiences with disability.

It covers access: from the helpless feeling of rage for lack of foresight with regard to physical accommodation in chairs, airplane seating, to tables in restaurants (and trying to figure out things ahead of time so that she will know how accessible it is). The existence of self-consciousness about space, striving for invisibility in public because of the the presence of so much visibility, so much difference.

It covers the public record piece: that when you are fat, your body becomes fodder for public concern and conversation, people always having your “best interests” at heart. That is precisely what happens with disability.

Backhanded “compliments” like, “don’t say that about yourself” (similar to, “but I don’t think of you as disabled!”) are delved into, as is sexuality – denying oneself kindness and gentle touch, by dint of thinking ourselves unworthy. And violence, of course there is violence: violence against the fat, easily relatable by women with disabilities, as most all of us have been sexually abused at some point in our lives.

And it covers the piece about realizing that the problem is not her, as she says, “I recognize that I am not the problem. This world and its unwillingness to accept and accommodate me are the problem.”

Also good:

The book is full of snappy soundbites, powerful little nuggets of truthful goodness.

Some of the popular highlights from kindle:

The bad:

I wanted to like this book. I really, really wanted to like this book, not just because a lot of my friends liked it, but because the author looks like someone I would love in real life.

But I didn’t. No way around it: I just did not like her writing style. I had a difficult time making my way through the simplified, choppy looping and repetition. While I like many of Gay’s soundbites (so tweetable!), her writing style is not the form that works best for conveying messages to me.

I am a sucker for prose. When I dug open Madeline L’Engle’s Do I Dare Disturb The Universe? after Hunger, I felt like I had stumbled, gasping and dehydrated, into an lake of shining, beautiful, shimmering words. L’Engle’s work is far and away what I want to be reading, but I’m glad that Gay’s work is out there for people that will resonate with her style.

And so, In Sum:

Some people have really loved Hunger: A Memoir of (My) Body. While I loved some of what Gay has to say, and while I appreciated her detail on the experience of being a fat person in America (I am definitely going to be more thoughtful about chairs, booths and tables), I did not love this book.

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Hunger: A Memoir of (My) Body Hunger: A Memoir of (My) Body
by Roxane Gay
Start date: August 6, 2017

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One of the more rampant stereotypes about people with Down syndrome is that they are always happy. Don’t ask why that sticks in the face of a screaming child with Down syndrome – even when someone actually sees my child in a rage, they have been known to comment (with a chuckle) about how “those” kids are “always so happy.” Incredulous, I’ve pointed at my daughter, her face turning purple and her tiny mouth pressed hard into a perfect wail of discontent, and the “always happy” commenter just laughs. Like her rage is just a quirky frame for her happiness.

When I saw the title of Kari’s book, “Not Always Happy,” I laughed. I knew right off the bat that I’d like it – even if I was totally judging it by the cover.

It’s a great read. It’s the story of her love for her husband (and their love of Whitman and movies!, and the birth of their family, through the adoption of their son, Thorin. Who has Down syndrome. And who – (drumroll please) is NOT always happy.

What I Liked About "Not Always Happy"

1. It’s entertaining

2. Kari writes in a super-approachable way

3. It’s funny

4. She uses a lot of movie references, and I love movies

5. She tells the no-fun sides of an IEP process in crystal-clear detail

6. It’s informative: I learned a lot about the adoption process through their story

Why You Should Read It

1. It’s a smooth, fun read

2. It stretches you, but not uncomfortably so

3. It will give you a better understanding of what the challenges that the educational system and our culture present with regard to raising a child with Down syndrome

4. It will make you laugh

5. You will also fall in love with their family

Read It!

Kari’s publisher is giving away a copy of this wonderful story to one reader here, anywhere in the world! 

To enter, just leave a comment here, or answer this question: “is your child always happy?!”

Winner picked by random.org in a week.

Meriah asked if I might do a post on “disability-related book recommendations? …books that you would recommend for a person with a disability who perhaps grew up with the medical model and is just now starting to branch out in disability culture?”

Since I’ve been keeping bibliographies as long as I can recall and have also maintained a “Suggested Reading List” for the undergraduate and graduate disability studies classes I teach, I had to think a bit about how I wanted to respond. So, in my usual fashion, I begin with some caveats: First, I chose not to repeat entries from both my blog post, “My Top 25 Disability Pride Books” or Meriah’s blog post, “13 Books for Understanding Disability Pride, Culture, Rights, and History

Second, I’ve only included books I’ve read; there are more books coming out, it seems, on a daily basis, and I’ve only read a limited number, despite the piles of books usually lying around on my nightstand and other parts of our apartment.

Third, when teaching, I’m often asked why disability topics are not included in elementary and secondary school curricula. I know this is changing, but clearly there’s a long way to go. So I’ve begun reading (and writing) books for younger readers. I’m including a few favorites in this list along with adult-oriented books.

Finally, I’ve tried to include books from diverse genres and geared for varied audiences.


Brown, S. E. (2003). Movie stars and sensuous scars: Essays on the journey from disability shame to disability pride. New York: iUniverse.

A series of essays follows my journey from beginning to identify as a person with a disability; to becoming a disability activist; to a focus on disability culture (including the definition of disability culture I wrote in 1996); and encounters with people and places around the world. While aspects of my life, like every life, are unique, there are also similarities with many other developing disability advocates of the late 20th century.

Burch, S. & Joyner, H. (2007). Unspeakable: The story of Junius Wilson. Chapel Hill: University of North Carolina.

This is not an easy book to read, because the story of Junius Wilson is horrific—a tale of discrimination, neglect, abuse, racism, and ableism. Wilson was a young, deaf, black man who found himself, inexplicably, in a mental institution. This is well-written academic book, and for those who can stomach it, a tale of disability encompassing most of the 20th century that, awful as it was, was not unique.


Clare, E. (2015, first published 1999). Exile and pride: Disability, queerness and liberation. Updated edition. Durham, NC: Duke University Press.

Clare has just published a new book, but I’ve not read it yet, so am unable to include it here. However, this book, in memoir style, is a story of transformation, awareness, and difference set in a small, logging town in the Pacific Northwest. It is written poetically, from an author who’s also a poet.

Johnson, M., with K. E Vincent. (2015). I love today: A story of transformation. Bloomington, IN: WestBow Press.

I’ve known Mark Johnson for 30 years, and admire him both as a key member of ADAPT and as a national disability rights leader who excels at facilitating both conversations and action. In reading this memoir, I was amazed at Mark’s journey from a young nondisabled man to learning first how to be quadriplegic, then how to thrive as a person with a disability.

Mark’s southern charm is clear throughout the book, but so is his passion and commitment to a world that needed (and needs) to change. Some readers may recall that in my poem, “Tell Your Story” there’s a section about getting a wheelchair ramp in a movie theater. That story came from Mark and it’s one of many stories detailed in this book.

Matson, F. (2004). Blind justice: Jacobus tenBroek and the vision of equality. Washington, DC: Friends of Libraries for the Blind and Physically Handicapped Individuals of North America and National Library Service for the Blind and Physically Handicapped.

This book is here because it’s a biography of one of the earliest disability rights leaders of the mid-20th century, who is largely forgotten today by many, if not most of us. tenBroek became blind when he was a boy, as a man he became a lawyer and law professor who helped create the advocacy oriented National Federation of the blind and influenced the Brown v. Board 1954 decision outlawing school segregation, among other achievements.. He was well aware of the need for disability rights and his 1966 California Law Review article, “The Right to Live in the World: The Disabled in the Law of Torts,”, which preceded by only a few years his death at a fairly young age, can easily be seen as a precursor of the Americans with Disabilities Act.


O’Toole, C. J. (2015). Fading scars: My queer disability history. Autonomous Press.

 O’Toole’s book is memoir and more. An activist, academic, and artist, she has spanned much of the development of the disability rights movement in the Berkeley, CA area from the mid-1970s through today. Corbett has both been a participant in, and an instigator of, many aspects of the disability rights movement, including, but not limited to, women’s and queer issues, and she has brought a keen, and critical eye, to all these events. At the same time, she is clear about her place in the world as a mother, an athlete, and a scholar. Written with readers who digest information in multiple ways in mind, this is an excellent book about the Berkeley disability rights movement, and beyond to the overall disability rights movement as well.

Shilts, R. (1987). And the band played on: Politics, people, and the AIDS epidemic. New York: St. Martin’s.

I debated about including this book, because it’s a few decades old and because AIDS and how it is (and those who have AIDS are) treated has changed so much since Shilts wrote this book. A gay journalist, who died from AIDS, Shilts writes about the beginnings of the epidemic like a detective story and how what was often thought of as a “gay” disease was ignored and discounted. This is an aspect of disability rights often repressed but remains a story that deserves to continue to be heard.

Moore, L. F., Jr. (2015). Black Kripple delivers poetry & lyrics. Madera, CA: Poetic Matrix Press.

Leroy, one of the founders of the Krip Hop, who I’m happy to call a friend explores music, disability rights, and other topics. While this book is a compilation of some of Leroy’s poetry it’s much more than that as well. It’s a trip down memory lane, into the blues, black and blind history, and contemporary black disability rights. Leroy provides a quiz at the end of the book and from both it and the book, I learned a lot.

Burk, R. & Gadotti, C. (2016). Painting in the dark: Esref Armagan, blind artist. Boston, MA: Tumblehome Learning Inc. [For children]

One of my students, several semesters ago, introduced me to Armagan, a painter who was born blind in Turkey. This biography recounts how Armagan learned to paint, and how he and his paintings became internationally known. In addition, as I read this book for children I learned Armagan is also an inventor, who has created new forms of paint that facilitate his work.

Brown, S. E. (2015). Ed Roberts: Wheelchair genius. Institute on Disability Culture. [For Middle Grade]

I’m putting another one of my books in here and including two books geared for kids about Ed Roberts, a pioneering disability rights leader who is often considered the (but is more accurately one of the) founders of the independent living movement in the U.S. and who became an internationally known leader. This book is targeted to Middle grade readers, 8 to 12 year olds. Carson and Connally’s book is targeted for younger readers. While my book sat in CD only format for many years, Carson and Connally published their book. After they did so, I had a number of conversations with Diana Pastora Carson, who encouraged me to get my book out as well and I thank her for that.

Carson, D. P. and Connally, P. W. (2013). Ed Roberts: Father of Disability Rights. Indianapolis, IN: Dog Ear Publishing [For early readers]

This book is geared to younger readers than my book on Ed Roberts. It is distinguished in part by the art of the late Patrick Wm. Connally who knew Ed well. I’ve had one of Patrick’s paintings in my offices for over 20 years, so I’m definitely partial to the art here–as well as the narrative.


Palacio, R.J. (2012). Wonder. New York: Alfred A. Knopf.

I read a listserv post that included an article analyzing El Deafo (see #14), which led me to want to read the book itself. When looking El Deafo up I came across Wonder and I’m glad I did. Augie Pullman is an endearing, struggling, delightful character, with multiple disabilities though the primary focus is on facial “differences”. The story focuses on Augie’s fifth grade year, when he moves from his comfortable world of homeschooling to enroll at a school.

Lots of people love this book, which is soon to be a movie (“Into the Rainbow”) starring Julia Roberts. Despite this, I found the book charming, and the author’s decision to provide multiple perspectives about Augie’s life advanced the story nicely. Even though I kept slowing my own reading, so I wouldn’t get through the book so fast, I was still sad to see it end.

Shang, M. & Shang, E. (2016). Mia Lee’s Wheeling through Middle School. San Bernadino, CA: Woodgate Publishing.

I slightly followed the Shangs’ American Girls campaign to get Mattel to make a doll who looked like Melissa, using a wheelchair. But I was really excited when I read that the sisters had published this book, which is both fictional and autobiographical, exploring what it’s like to be an Asian American, wheelchair using girl in middle school.

Graphic Novel:

Bell, C. (2014). El Deafo. New York: Amulet Press. (2nd – 6th grade)

When I read a synopsis of an article that analyzed this book it didn’t take me long to realize I’d rather find the book itself. While I knew it was a graphic novel, that somehow didn’t register with me as a series of comics, which I’m only saying for any other older folks who might not realize this as well. This autobiographical graphic novel is about the author’s coming to terms as a young girl with having a hearing impairment, using a visible hearing device that she wore around her neck and in front of her chest, and her desire to make friends.



Historian Steven E. Brown (PhD, University of Oklahoma, 1981) is Co-Founder, Institute on Disability Culture  and retired Professor of Disability Studies, Center on Disability Studies, University of Hawaii (currently Affiliate Faculty). He served as a 2015 Diversity and Inclusion Fellow for the Association of University Centers on Excellence in Disabilities (AUCD) Diversity and Inclusion Toolkit Initiative, and continues to consult with AUCD. He also works with BCFS in San Antonio on their Emergency Management Division, providing disability expertise.

Brown encountered disability-based employment discrimination based shortly after earning his doctorate, which led to changing his career path. In the 1980s, Brown worked at and directed an independent living center in Oklahoma, organized numerous community advocacy coalitions, and represented regional Independent Living Centers in legislative education about the passage of the Americans with Disabilities Act. In 1990, Brown moved to California to become Training Director at the World Institute on Disability (WID). In 1993, Brown received the first federal funding to research disability culture, which resulted in the monograph, Investigating A Culture of Disability: Final Report.

After relocating to New Mexico, with his wife and partner Lillian Gonzales Brown, in 1994, they co-founded the non-profit Institute on Disability Culture. In 2002, they moved to Hawai‘i, where Brown joined the Center on Disability Studies (CDS).

Brown has published many articles about disability rights and is a national and international speaker. His books include Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride (2003); Surprised to be Standing: A Spiritual Journey (2011); and Ed Roberts: Wheelchair Genius (2015), a Middle Grade biography of the late 20th century disability rights pioneer. He is also a co-editor of the anthology, Rethinking Disability: World Perspectives in Culture and Society (2016). Author page at: https://www.amazon.com/Steven-E.-Brown/e/B004H9QX7Y/ref=sr_ntt_srch_lnk_1?qid=1496349465&sr=8-1

Brown relocated to the California Bay Area in summer 2014, after retiring from CDS. He he continues to write, advocate, speak, and teach (including via the University of Hawaii, an online course he created, which he has taught at both the undergraduate and graduate levels–and as far as he knows–is unique), called, “Disability History and Culture: From Homer to Hip Hop.” See: http://www.cds.hawaii.edu/pages/disability-and-diversity-studies-faculty-university-hawaii-manoa

Brown’s work remains driven by the Institute on Disability Culture mission/vision: “Promoting pride in the history, activities, and cultural identity of individuals with disabilities throughout the world.”

Brown blogs at http://www.instituteondisabilityculture.org/manifesto and is on Twitter @disculture.

What Matters: Reflections on Disability, Community and Love

What Matters: Reflections on Disability, Community and Love is a new book by Janice Fialka, reviewed by Naomi Ortiz

Community connections can happen in any place, at any time.

Recently I was on a strategy conference call and I mentioned the work I do around Disability justice. A young parent messaged me after the call wanting to know how he could best support his six-year-old disabled son. I had just finished reading, What Matters: Reflections on Disability, Community and Love by Janice Fialka and knew it was the perfect book to help him on this journey with his son.

Imaginative and honest What Matters builds upon a foundational essay from when Janice first learns of her son’s diagnosis and continues through almost 4 decades of growth and activism. Janice’s poetry and essays provide a heart-centered context to navigating and eventually advocating for a path of inclusion.

On this path towards inclusion, at one point Janice reflects, “We learned that as parents we have to advocate for and with Micah to truly integrate him into as many activities as possible… We learned that we can’t be silent and hope for the best… We learned that not all people will be on our side…” (Page 73)

Essays from the entire family provide a 360° perspective of Micah’s journey through school and out into the world. Micah’s sister shares lessons she’s learned through growing up with a disabled sibling. In Rich’s essay, Micah’s dad accurately states, “We knew that the ‘system’ would not provide most, if any security.” (Page 225) Micah speaks to this point in several essays and interviews where he describes building support systems to live the life he wants to lead. I wonder if one day the son of this young father could see Micah as a role model, not to be like, but in the sense of having and pursuing dreams?

How do we create community around families and disabled people to live interdependently in the world? How does this happen outside of or in partnership with systems of support? Through exploring friendship, working with professionals, developing a Circle of Friends as on-going structure of support, and connecting to disability community and pride, this book provides a lens to view one family’s journey to find the answers.

Building community is a nuanced endeavor. I’m excited for this young father to have a real life, tangible example of how one family created community to fill the systems’ gaps. I imagine this father meeting the professionals in his son’s life having a clear understanding of how his feelings and reactions aren’t unusual or his to bear alone. Even more importantly, I hope that after reading Janice’s advice to professionals, he may be better able to articulate what he and his son need.

Sometimes at the beginning, when everything is hazy, scary and unknown, all we need is a light to show a brightly and briefly a larger landscape of possibility. May What Matters be one lighthouse in this young father’s voyage.

To learn more about Janice Fialka, What Matters: Reflections on Disability, Community and Love” published by Inclusion Press and to order the book, visit: Dance of Partnership.

To order the book directly through Amazon, click here.

Naomi Ortiz

Naomi Ortiz is a writer, poet and visual artist who cracks apart common beliefs and spills out beauty.

Naomi is a nationally known speaker and trainer on self-care for activists, disability justice, and intersectionality. She has conducted hundreds of workshops and trainings on a wide range of areas and has published articles, manuals and poems.

She is a Disabled, Mestiza (Latina/Indigenous/White) living in the U.S./Mexico borderlands.

Naomi’s upcoming book, Sustaining Spirit: Self Care for Social Justice invites and supports readers to explore the relationships between mind, body, spirit, heart and place in order to integrate self-care to survive and thrive. Sustaining Spirit: Self Care for Social Justice will be released in 2017.

Connect with Naomi’s writing, art and learn more about Sustaining Spirit at: www.selfcareforsocialjustice.com

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

Behavioral Issues and Down syndrome

Moxie, my daughter who has Down syndrome, has recently had behavioral issues at school.

A bit of background: Moxie goes to The Best School Ever. She has a wonderful, caring teacher and Moxie’s aide is a lovely woman whom Moxie has known and trusted for years now – ever since we first moved to the Lost Coast.

In a nutshell, the situation is as good as it gets: Moxie’s in a fantastic environment for her, she loves her classmates, she has friends, she is learning and really thriving.

So, Moxie up and starts saying, “no”

As in, saying “no” to her teacher and her aide’s requests for her to behave, sit down, etc. Just flat-out “no” and continuing with what she (- Moxie!) wanted to do.

We’ve had IEP meetings of course, and while we’ve covered speech and general assistance in them, we’ve never covered behavior. We also haven’t covered some of the other pieces that I’ve found are pretty common to cover with kids with Down syndrome.

We didn’t have an IEP to turn to with this new behavioral development of Moxie’s, and all of us were kind of stuck: what to do??

First, I turned to my parent tribe

No one ever gets this stuff like someone else who has walked it. Parent-Tribes of kids with Down syndrome rock!!! I’m so grateful for the people who have gone through this already and are ready and willing to share their hard-won wisdom with me.

Educational Strategies for Children with Down Syndrome – this is a closed Facebook group with some 6,000 members. A wonderful group to belong to (and that I have mentioned on my resources page). I checked in with the group about Moxie’s behavioral issues and asked them for advice. Almost immediately, I received numerous comments with very helpful tried and true ideas and advice.

With this in hand, I turned to The Book: Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method

Supporting Positive Behavior in Children and Teens with Down Syndrome

This is a “must-own” for the parent of a child with Down syndrome. It covers the fabulous “flop and drop,” bolting, and other common issues experienced in raising people with that extra chromosome.

It’s short, an easy read, and jam-packed with useful tips. This is hands-down the most useful book that I own in helping me raise my child with Down syndrome.

Many of the tried-and-true ideas and advice that came from my parent tribe matched what The Book said, so I summarized it all into a plan and gave it to Moxie’s teacher and her aide.

The plan goes like this:

The problem:

Moxie will refuse to do something as asked. She may become upset and frustrated.

Some solutions:

  1. Create a visual schedule

Create a chart of the class schedule… in pictures. Have an arrow or place holder which moves to each section as the day progresses. Moxie as a visual learner, will have a better sense of what is coming and what to expect.

  1. Create a visual chart for transitions

For each transition area and/or time that Moxie might usually have difficulty in working, give her a visual check – a sticker, etc. Have it clearly outlined that after so many stickers, she will get a prize (for example, place a gold sticker at the end). Rewards that work at home are time with mommy or daddy – such as mommy will watch her favorite show with her, or do art together. What could work at school could perhaps be taking a swing ride with her aide or  having special time with her teacher? She craves the attention and social interaction more than anything.

  1. Use a clock/timer/hourglass/bell

Use a clock/timer/hourglass/bell to signal “changing activities is 5 minutes” “Look, we have 2 more minutes so lets start our clean up now.” etc. She could have a paper clock on her desk to signal “Time for reading” and she can compare the pictures on her paper clock to the wall clock” Lots of kids have trouble with transitions and they simply need more cues to change.

  1. First/Then

Implement the “first/then” system. Which is, “first we sit, THEN we color”, or “first math, THEN recess.” You may need to word it in ways that work for her, just being sure to keep the “first, THEN”. She tends to resist or try to bargain, but then will work it out and make it her own, usually repeating it back like it was her idea.

  1. Positive Praise

Tons of positive praise works better with her than chastisement. She will stop caring if you chastise too much, but she’s eager to work with you with lots of praise and focus on what she’s doing right. So, tons of praise for doing the right thing when that happens, and make a huge deal out of sitting, following directions, completing a task. That can include high fives, a pat on the back, and verbal announcement of how hard she worked.

  1. Breaking Tasks Down and Restructuring

It’s recommended that her educational tasks are interesting and include visuals and manipulatives. Sometimes things need to be broken down into smaller steps with breaks for success.

Moxie may not have the same stamina for focusing on a task as typically-developing peers, especially if it’s a non-preferred activity. So spending a shorter amount of time on the task and then moving on to a few easier related tasks that are more fun. For example in writing, she can provide most verbal information on what to write. The actual writing is more challenging, so Moxie could trace the words and then after finishing a few sentences or a page, she could perhaps move on to letter tracing with a marker, and then some easier tracing sheets.

  1. Respond, but Don’t React

Moxie does some negative things because she enjoys the attention and reaction she receives from you – even if it’s negative. Bolting, refusing to comply could all fall under this. This is because, like many people with Down syndrome, she is highly social and tuned into you – you are often the reward, even if you are only giving her negative attention.

When she does something along those lines, you should:

  • Take away eye contact
  • Keep your facial expressions neutral
  • Speak very little, if at all
  • Keep your tone of voice neutral
  • Keep your emotions under control
  • If removing attention and emotions is not enough, direct Moxie to “take a break”

And you should not:

  • Look right at her
  • Make angry, upset faces
  • Try to explain, using words, why what she did was wrong
  • Speak in a hard or animated way
  • Show strong emotions

When you remove the emotions and attention, it’s not as fun for her and she stops the behavior.

  1. Keep in Mind:

Things that tend to work well with people with Down syndrome:

  • Predictability
  • Structure
  • Visuals

What doesn’t work well:

  • An unpredictable environment/not knowing what to expect next
  • Lack of routine or structure
  • Explanations given with speech alone

It would be good to keep a Behavior Log so that you at school can let us know what is working and not working, and we can do the same. It’s very important to keep our methods consistent.


We’re still working this out – Moxie’s teacher and her aide are testing this all out with her, and seeing what’s a fit.

I’m excited to keep the learning and experimenting up, and figure out how best to continue to help this awesome little girl flourish.

Pin-Ready – 

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

Harry Potter and the Prisoner of Azkaban:

Harry Potter and the Prisoner of Azkaban (free on Kindle Unlimited is reviewed in our third installment of book reviews in The Kid’s Corner, Micah’s little spot on this blog.

He’s whipping through those Harry Potter books super fast. His first review was the Sorcerer’s Stone , and the the second was the Chamber of Secrets (both captioned!, not #craptioned, cuz he’s a CODA and knows better)

Here he is (with a little help from Mack).


Adding captions is easy if you follow this NCDAE tutorial


Micah loves comments (hint, nudge) !

Gifts: Down syndrome

Stories were important to me before I had a child with Down syndrome. I was, after all, the little girl who would read until her eyes ached, who literally got in trouble for reading too much.

But after finding out that Moxie was going to be coming with an extra chromosome, they were not just important; they were necessary. They were vital.

I needed to know what others had experienced in having a child with Down syndrome, their voices were absolutely critical to me. Those stories were not a luxury, they were a lifeline.

One book in particular that I reached for and found solace in was Gifts – which was a collection of stories from mothers of children with Down syndrome.

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

The 10th edition of this stellar book has just been released and I am honored to be a part of it.

My story of ‘Choosing Moxie’ is featured in it (Chapter 13! Page 59!).

I am grateful to be in such good company, and delighted to feel like I’ve reached full circle – where I am now able to offer up my own story in the hope of helping someone who is now, as I once was, desperately looking for stories and a voice to connect with.
Gifts: 10th Anniversary Edition

Here it is! There are only 12 copies on Amazon as of writing this – link to them is here.

More on the book:

Michelle from Big Blueberry Eyes is in it! I love her. And Sandra (Sean’s mom from the hit reality show, “Born With it”), along with a host of cool moms from the Down syndrome community.

The depth and breadth of the stories represented means that there is literally something for everyone.

I hope you read it, pass it on and spread the word that this expanded edition is out there now.

- Pin it!

The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood

After receiving a pre-natal diagnosis for Moxie via amniocentesis, I was scared. I think it’s more accurate to say that I was terrified, actually – I was terrified of having a child who would be arriving in the world with an extra chromosome, sporting Down syndrome.

I went through a cycle that seems to be rather typical: I needed stories of families who were raising a child with Down syndrome. I needed to connect with other mothers. I needed information about Down syndrome. I needed a community that understood.

And so I joined the Baby Center group, I ordered every book I could find about Down syndrome and I visited my local Down syndrome Connection.

All of those helped in some way. None was exactly what I needed, but none of them left me completely empty-handed either. Perhaps what helped me the most was reading the stories contained within the Gifts books, as well as some parent memoirs (Martha Beck’s book, Expecting Adam, immediately comes to mind, as does Kathryn Lynard Sloper’s book, The Year My Son and I Were Born). The medical books scared the crap out of me (especially the one with the little boy swimming on the cover), and resources were scattered all over the place. It was difficult to tell what group was what, and what I needed to be aware of and or/prioritize myself over.

Enter The Parent’s Guide to Down Syndrome

This book was written by people I know, Jen Jacobs and Mardra Sikora. What Jen and Mardra accomplished in this book is amazing.

They compiled seemingly every known US-centric resource related to Down syndrome and what a parent really needs to know and they put it all in order. They couched the information and resources with real-life stories from parents and best of all, with advice from people with Down syndrome themselves.

I’ve never seen anything like this book before.

It’s helpful. It’s informative. It’s comprehensive, covering pre-birth through adulthood, but it’s not overwhelming – you can jump around to the chapters that directly pertain to you. A great many aspects related to Down syndrome are covered – from Infantile Spasms (which was a huge concern of mine when Moxie was younger) to resources on developing your IEP’s (Individual Educational Plan). Some – like cross-disability diagnoses – are not, and there is a flub or two in language. Hopefully in the second edition these will be corrected, and the missing pieces (like dual diagnoses) covered.

The Parent’s Guide to Down Syndrome is good

What I love about what is covered is that nothing is on overkill – it’s really just enough to give you some information and point you to where you can learn more, or receive more support. The Parent’s Guide to Down Syndrome is like the cliff notes of parenting an individual with Down syndrome – the solid-gold nuggets of hard-won wisdom and knowledge distilled into an easy-to-read, well-organized and engagingly conversational book.

I’m also in there, both as a parent and as a resource (I get really embarrassed when I see my name in print, it’s like, “holy cow! That’s MEEEEEE, let me go and hide under a table now“).

A lot of my friends are in there, too – it was so much fun reading their stories and getting excited over seeing their names in print (“hey! There’s Missy! Jisun! Melissa! Deborah! David! Stacey!“). Pretty much everyone that I know and respect in the Down syndrome community is represented in this book through one of their personal experiences. I love that, not just because they are friends. For me, it’s proof that this book is actually written BY and FOR parents.

There is a living, breathing rhythm in the disability community that is, “Nothing About Us Without Us”. This book nails that for those of us who parent an individual with a disability: it is BY parents and it is FOR parents. It is a grassroots effort to gather voices in one collective. The voices are different – it’s not a book that is about everyone saying the same thing; it’s a book that is about what this experience is for a great many people, and what other parents have found helpful.

Some other quick things I wanted to mention:

  1. This book is US-centric; most of the information and resources are based around laws and resources in the United States
  2. This book is very current. The websites and information listed are very much in the “now” – there are internet-based groups, Facebook groups and supports, etc.
  3. This book is available at the links below if you want to buy it directly and not wait for the giveaways.

Giveaway #1: The Parent’s Guide to Down Syndrome

Just comment below to enter, or answer this question: “blue or yellow?”

Winner picked via random.org on January 10th, 2016, announced on this blog and A Little Moxie’s Facebook page (http://www.facebook.com/withalittlemoxie)

Giveaway #2: Grand Prize Giveaway

This is the big cahoonie of giveaways – a joint giveaway for all blogs that are participating in this book’s “Blog Tour”. The grand prize drawing will be January 15th, and you can win a bunch of stuff – like, “I love someone with Down syndrome” tote, fun stickers, a registration to this year’s 321eConference, other book resources, and of course, a copy of The Parent’s Guide to Down Syndrome. This resource package has a value of over $200!

Click the rafflecopter link below to join:
a Rafflecopter giveaway

Buy The Book Now:

Via Author Site

Through Barnes and Noble

Or Amazon

Via Indie Bound Booksellers


I received a kindle copy of The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood to review. All opinions on the book are mine, and I received no compensation for this review.

parent's guide to down syndrome book cover

I’ve been meaning to do a few more book reviews on this here blog. I kind of have a hard time getting around to it most of the time, but since I’m laid up with a maimed ankle…! I’ve got the time!

Big Magic is by Elizabeth Gilbert, and you’ve got to know that she’s not even writing this for YOU. She’s writing this for herself, for FUN, because she likes writing and the creative process in and of itself makes her happy.

I had to remind myself of that when I got to around the “90% done” mark on kindle. It was just kind of like… “how jolly nice, Liz, that you’ve done everything so… very right in your life! Happy for you! But now I’m 42 and you are only 4 years older than me and I’m feeling like a big, fat failure.

Aside from that little feeling that I got at that particular time, I loved this book. It’s like a great conversation with a funny, wise and successful friend. It is full of good advice, and a lot of the advice is stuff that I think creative young folk should read. So much of this is true and so much of the truth of it I learned the hard way, late. Like the pieces about degrees and validation – that if we are looking for a creative life, nothing is really going to take the place of practice, and we don’t need the validation that a degree provides.

Which is to say, we don’t need someone’s permission to be creative or practice art in whatever form. We need to just do it.

The other thing I really liked was her bit about being a “deeply disciplined half-ass.”

She says that we need to forget about being perfect, that we don’t “have time for perfect” because “perfectionism stops people from completing their work…” She also says that, “the most evil trick about perfectionism though, is that it disguises itself as a virtue” and that “perfectionism is just a high-end, haute couture version of fear… perfectionism is nothing more than a deep existential angst that says, again and again, “I am not good enough and I will never be good enough.”

I liked that part a lot because I get it. I’m not a perfectionist because I know that if I am, I never get it done. I never get that post published, I never get that piece submitted, I never wrap up a painting or share a photo that I took. Because I am (very) aware that everything I create is imperfect; I can see the imperfection even as I share it! But if I hold on to it until it’s totally perfect, I’ll be holding on forever. And that’s a fact.

So, that’s it! I wanted to share this with you because I don’t know if you’ve been like me, kind of searching for something that lights a fire under my ass, creatively-speaking. Something that maybe sort of helps me frame things or understand things better. While I loved this book for the great read it provides, I don’t think it was that (ass-lighting fire) for me.

But I do wish I had read it 20 years ago (and believed what Liz has to say): it would have saved me a lot of time.


Part 1: Review of "From Grief to Celebration"

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


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


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


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


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


Part 2: Interview with Margaret "Gary" Bender

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

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

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

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

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

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

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

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

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

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

6. What was your favorite part in your book?

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


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

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

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

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

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

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

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

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

10. Do you have any questions for the reader?

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

Thank you, Gary!


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



Connect with Gary:

Blog: The Ordinary Life of an Extraordinary Girl

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

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

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



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


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


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


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


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


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


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


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


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


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


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


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


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


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

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

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

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

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

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

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

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

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

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

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


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

Interview with George Estreich

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

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

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

Thank you!

Last year in a Prelude to a Review, I wrote:

This is not my review of The Shape of the Eye. I simply found I had so much to say about this book that I had to break it up…when I received my copy of The Shape of the Eye, I cracked it open and just…fell in love.

There is some tight, stupendously brilliant prose going on over there in The Shape of the Eye. It is way up on my list of top books I have ever read, simply ever. It’s exquisitely crafted.

With expert marketing hands on it I wager it would make bestseller lists; it’s that good.

The Shape of the Eye – intersecting thoughts of race and disability. A must-read book that will not be re-printed by its current publishing house, a book that is down to the last few hundred copies.  It’s still available on Amazon and you should get it while you can

More on that in the actual review. This isn’t the review, remember?

That’s what I wrote and I have been re-reading The Shape of the Eye in preparation for a proper review as I will be hosting an author interview with George Estreich on this blog next week. I find myself very nervous about it though –  I liked loved the book so much that I don’t want to mess up the review.

So I turned to my friends Lisa and Alison and asked, in the interest of having something posted that is more complete, if I could post their reviews? Lisa, you see, writes wonderful reviews – she basically tears books apart with her eyes then re-assembles bits in a meaningful way. And Alison has a way of writing that usually has me laughing out loud and nodding my head enthusiastically in agreement.

I really liked their reviews on The Shape of the Eye -and thought they would in essence, speak for me.

Here they are. And thank you, Lisa and Alison.


The Shape of the Eye, reviewed by Lisa Morguess
I have read numerous memoirs about having a child with Down syndrome. The Shape of the Eye is, hands down, the best one I’ve read. Where Jennifer Graf-Groneberg’s Road Map to Hollandwas a lifeline to me in the days and weeks immediately following my son Finnian’s birth, diagnosis of Down syndrome, and major surgery as a newborn, soothing me and assuring me that the grief I was feeling was normal and that it would pass in time, The Shape of the Eye examines that grief, without judgment.
Like so many parents of children with Down syndrome, George Estreich and his wife were shocked by their second daughter’s diagnosis soon after her birth, and like so many of us, they found themselves suddenly thrust into the alien territory of raising a child who is different, who is largely, in an abstract way, seen as defective by society. His book, which he spent nearly a decade doing research for and writing, is a personal, heartfelt, often witty account of raising a child with Down syndrome. More than that, however, it is also a historical account of what has shaped our attitudes about Down syndrome – the truths, half-truths, non-truths, contradictions, and paradoxes. This is a book not only about Down syndrome, but about family, and ethnicity, preconceived notions, and what it means to belong.
Mr. Estreich, a stay-at-home dad and a poet by profession, is an extremely gifted writer. I could not stop turning the pages and throughout the book often felt as if I could easily sit down with him over coffee and shoot the shit about Down syndrome, about parenting, about family, about life.
Five stars. I cannot recommend this book highly enough.
Lisa Morguess

Life As I Know It
Turn the Page

The Shape of the Eye, reviewed by Alison Piepmeier

Here’s my big sales pitch for The Shape of the Eye:  this is a memoir that doesn’t enrage me.

I’m sort of compelled to read new memoirs by parents of kids with disabilities, particularly parents of kids with Down syndrome.  It’s an unhealthy compulsion, because my intense frustration with most of these memoirs is so evident that Biffle has often asked me to stop reading them.  The other day I was mad for some complete other reason, and Biffle said, “Are you reading a memoir?”

I get angry because the memoir writers often spend much of the memoir detailing their misery:  here’s how terrible it is to have a child with Down syndrome.  This story is at this point so old it’s clichéd, and it’s not functional in the ways I think these parents ultimately want it to be.  They end the memoir at a place of love for their child, and they seem to want the reader to feel that love as well, but what the reader more likely feels is some version of, “I’m glad that’s not my kid.  But bless their hearts.”

The Shape of the Eye doesn’t do this.

George Estreich certainly acknowledges profoundly mixed feelings when his daughter Laura was born and diagnosed with Down syndrome.  For instance, he writes, “I felt that Laura’s life was valuable, that she was a child, a sister and daughter and granddaughter above all, that she might learn and thrive.  I also felt that our lives were over, that her birth was a tragedy, and that we were condemned to a half-life of hospitals, acronyms, therapists, and forms” (xiii).  So here’s what he does:  he acknowledges this emotional place of paradox, and then he launches into a thoughtful reflection (even analysis, although I get that this word doesn’t turn other people on the way it does me) about how he and his family create meaning and love in the midst of a culture that, by and large, doesn’t do particularly well with disabilities, particularly with cognitive ones.

And he discovers that life with Laura is like life with a child:  delightful, challenging, hilarious, frustrating.  This is not a book about Laura’s birth being a tragedy.  It is, as is true for all memoirs, a book about George Estreich, about his growth, his family heritage, his struggles with depression and his expansion into the role of father/writer/activist.

And what I particularly appreciated is that it’s a book about how we understand Down syndrome, how we talk about it.  Estreich (like me!) is critical of many of the familiar stories that are out there, and he notes, “Each time I shared the news, I faced the difficulties of narrative” (26) (interestingly, I was making this very point Wednesday in a lunch with another scholar who studies disability).  He actually has lots of good points about the importance of narrative—about the problematic descriptions of kids with Down syndrome as “sweet”:  he even calls out the “little angels” description that pisses me off so much.

He writes about his own process of beginning to write about Laura.  He does some reading—medical and historical—about Down syndrome and discovers that the way it’s described is often nauseatingly bad:  unforgivably inaccurate (one fairly recent medical book describes people with Down syndrome as “trainable”) and offensive.  He discovers that “What Down syndrome ‘was’ mattered less than the way it was described” (151).

By the time I got to this part of the book, I knew I’d found an ally, somebody who should come hang out with us at the NDSC Convention (come on, George!), and someone I should talk to about my research into prenatal testing.

I’ve gone through this review resisting the urge to offer tons of quotes from the book, but let me end with this one:

If our technologies are to benefit people with Down syndrome, then their lives need to become more real to us.  Science can illuminate one part of that reality, and technology can affect it.  But only story can convey it (208).

I completely agree.

Alison Piepmeier

blog: Baxter Sez


George Estreich:
PS – Stay tuned – next week will be his Author Interview 
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