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Down syndrome Book Resources: 20 Indispensable Books for Parents in the Ds Community: a list of books that are fantastic. Missing any? Add your suggestions in the comments!

Disclosure: There are some affiliate links below, but these are all highly recommended books, all of which have been personally verified and/or personally read. 


Down syndrome Book Resources: some parents feel like they can never get enough.

That makes sense, given the fact that Down syndrome is still not fully understood, and that for most of us parents, our child with Down syndrome is our entry into the world of Down syndrome, Development Disability and sometimes Special Needs*(see note below).

Our child is our guide, and wanting to understand more, we seek out all of the books we can get our hands on.

I myself purchased or reviewed all of the books listed below.

The ones that I most highly recommend I have put an * before.

Your local library should offer most of these books, and/or your local Down syndrome Association – if they don’t, request that they purchase them!

Most are also easily available through Kindle (on Amazon) or Nook (Barnes and Noble). The medical/education books may be available through your child’s school or you can request them to purchase it as a part of your child’s IEP.

Down syndrome Book Resources

Practical/Skills/Training/Medically Oriented

Supporting Positive Behavior in Children and Teens with Down Syndrome

Gross Motor Skills in Children With Down Syndrome: A Guide for Parents and Professionals 

Fine Motor Skills for Children With Down Syndrome: A Guide for Parents And Professionals 

Teaching Children with Down syndrome About Their Bodies, Boundaries and Sexuality

Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals

Babies with Down Syndrome: A New Parents’ Guide

http://downsyndromepregnancy.org/the-pregnancy-book/ – free downloadable book + ripping site with resources

Education

Teaching Math to People with Down syndrome and Other Hands-On Learners

Teaching Reading to Children with Down syndrome: A Guide for Parents and Teachers

 

Collections

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

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives – 10th Anniversary Edition (updated, with more stories) – this is a MUST-read

Gifts 1: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

Gifts 2: How People with Down Syndrome Enrich the World

 

Memoirs/Personal Stories

* Up Syndrome (a memoir by a woman with Down syndrome)

The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery

Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic

The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit

Life with a Superhero

From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome

Sun Shine Down

Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny

Road Map to Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome

Choosing Naia: A Family’s Journey

My Heart Can’t Even Believe It: A Story of Science, Love and Down syndrome

 

Fiction:

The Unfinished Child

 

Read Book Reviews:T21 Writers Alliance

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* Note: “Special needs” and “disability” are commonly used interchangeably. This is incorrect.

A “special need” is an outdated educational term referring to an individual’s unique educational need, as defined through an IEP. A “disability” is a way of seeing, hearing, speaking, thinking, behaving, moving, feeling that is less common than most.

The words are NOT interchangeable, and the word “disability” is not a bad word. Please use it to refer to your child’s Down syndrome. For more information on disability vs “special needs”,  please read this post.

 

 

 

#ShePersisted: The Disability Edition

As a proud Massachusetts resident I absolutely got the full-body tingles when Sen. Warren did what she does best: standing up for justice in the face of oppressive bullshit.

You’ve all heard it now about how “…Nevertheless, she persisted.”

Empowering words these days, and if you’re anything like me you’re probably looking for more reading material to quench your souls! So, me being me, I figured I’d share a list of books with the theme “she persisted.”

Below are some books I’d highly recommend where women weather all manner of social, natural, and unnatural forces with panache.

#ShePersisted: The Disability Edition

1.) We Should All Be Feminists by Chimamanda Ngozi Adichie.

If you haven’t heard of Adichie before, you need to HURRY to your nearest library or bookstore to get any words by her. But this small chapbook is based off of her TEDx talk where she tells the audience a story that feels like we’re totally swept away elsewhere.

Reading her words is what I think the experience of cramming your brain full of brightness without feeling like you’re learning is. In my perfect world it is what being a feminist would be like, easy and bright instead of angry and burdensome.

Until that day comes we have Adichie’s powerful simplicity to help propel us forward.

2.) Ruby Fruit Jungle by Rita Mae Brown.

I was given this well-worn book by my friend Cindy (who will evil side-eye me for subtly revealing her elder status..). When I first got it I thought “cool a real vintage lesbo novel!” 
This was my first Rita Mae Brown book that I’d ever read and immediately I knew I wanted to be best friends with the spitfire main character, Molly Bolt. Molly is an adult in miniature when we first meet her.
Wielding a snarky tongue that resonates with my twisted humor, Molly has the kind of personality that could only otherwise have been developed after years of struggling to figure out what she wants. But it’s not just that by the 6th grade Molly realizes she is a dyke that makes this book revolutionary – it’s that in 1973 when this book was published, I imagine Rita Mae Brown did so with a proud middle finger to the patriarch.

3.) God Help The Child by Toni Morrison.
All of the women in this book have flaws, and it’s not often in literature that we find women carrying these flaws throughout their lives. Instead, often times the tropes for women are dull and stereotypical. Usually women are either needing to be saved, or she is burdened by her family, or she is a dependent, or she has some epiphany about love and how it doesn’t define her.
But the women in God Help The Child are complex because they are defined by blue-black skin color, social ideas of her skin color, her mother’s shame about her skin color, and the histories of the implications of her skin color that existed before she did.
The realities of women are hardly skin deep and Toni Morrison packs a punch to deliver it all.

4.) The Boston Girl by Anita Diamant.

Okay so, maybe slight bias including this one here because I am from Boston after all. But I think more than ever that knowing the history of how women were treated is vital to our progress.

This is a story of a grandmother re-telling to her granddaughter what it was like to grow-up as a Jewish girl in Boston’s North End.

It’s not just a quaint grandmotherly story as we learn about how her family lived in the tenements, the tactics women at the time used to resist!, and how immigrant culture has shaped generations of this family. This is a story that makes the political personal, and the personal into a deeply entrenched truth that cannot be ignored by posterity.

5.) Hyperbole and a Half by Allie Brosh.

This is a graphic novel with some of the most insightful comments on mental illness, and depression that you will ever read. A

lso, it has lots of color and stick figure drawings that remind us you don’t need to be all packaged together with a bow on top, and then present yourself in a neat easy-to-digest manner to be taken seriously.

So that’s why I included this one on this list because sometimes we all need to be reminded: screw expectations, this is how I’m going to wave my freak flag! These squiggly animated drawings convey a range of emotions that will often take you by surprise. You know how they say, a picture says a thousand words!

6.) An Unnecessary Woman by Rabih Alameddine.

When was the last time you read a book about how a woman survives the Lebanese Civil War? ‘Nuff said.

This is not your typical war story. I actually put this book down the first time I got it because I couldn’t quite get into it on the first try. But then I came back to it almost two years later, and I’m glad that I stuck with it.

The main character is Aaliya who is in her 70s, and has spent her adult life translating works into Arabic. Why? Because she wants to, and that is how she spends every New Years day – choosing a new work to translate. This is a story about one woman’s love of literature, and ultimately how women band together to bring out the best in each other.

7.) Salvage the Bones by Jesmyn Ward.

The writing here has stayed with me for years after I’ve put this book down.

Esch is a pregnant teenage girl who is largely left to her own devices in the midst of her father, and brothers in a rural impoverished town in the South. In an environment that is shaped by the men she is surrounded by, and the side culture of dog-fighting – Esch soon realizes that a male-dominated world is not the only thing in her way.

I don’t usually cry when I read books, but I sobbed through much of this by the time Hurricane Katrina wallops their home. How does a family survive in this situation, and more importantly how does a young woman survive for her family?

8.) Don’t Call Me Inspirational: A Disabled Feminist Talks Back by Harilyn Rousso.

This book will always have a special place on my bookshelf, and Rousso’s words will forever be emblazoned in my soul to keep my crip pride fierce.

This book first delineated for me the differences between living with a diagnosis, and identifying as disabled.

What may seem like a simple shift in paradigm for me has actually become my lifelong commitment to social justice and activism. Rousso throws the messiness of disability life on the pages to flip the social convention of typical disability tropes in literature – so the only thing readers are overcoming are their own misconceptions.

It’s clear that being a disabled woman is never going to be easy, but knowing there’s women like Harilyn Rousso who live the life unapologetically is equal parts empowering as it is humbling.

9.) Fun Home by Alison Bechdel.

I doubt I really have to write much about this one as most probably have heard of the Broadway musical.

In a home environment that was equal parts morbid as it was traumatizing, Bechdel grows-up discovering herself as much as she does her late father.

It isn’t often when we see relationships between fathers and daughters being analyzed in such detail with such sadness, and humor. By the time Alison realizes her own lesbian identity, the elephant in the family that is her father’s closeted life is all but flung into the open.

I think that the way Bechdel has been able to develop her family’s past into a multi-layered narrative is a skill that I cannot even begin to imagine having the patience to do. It is so often those closest to us that we have such a difficult time seeing objectively, and under more than one lens.

10.) My Body Politic by Simi Linton.

This is a memoir of a woman who on her way to a Vietnam war protest from Boston to D.C., and winds-up in a car crash paralyzed.

But stop right there because what begins as a tragic political act only catapults readers into the throes of disability activism. Simi Linton is hospitalized and sent to rehab at a time when none of the patients were taught how to be disabled, only how to manage their injuries.

Linton takes us directly into the heart of grassroots organizing as she schemes with other patients in the rehab center to redefine sex, we go onwards to the Society for Disability Studies, and then gradually to a life of how her personal is political.

Sandy Ho's Guide to the Disability Edition of books that relate to #ShePersistedFollow Sandy!

I follow Sandy Ho on Instagram (@oiperfect). She often has a photo of herself with a book she’s reading, and it always looks interesting. When I saw a recent update on Facebook with her Top 15 books of 2016, I jumped up and asked her if she’d guest post here – I’m always looking for good reads, and I’ll bet you are too!

Top 15 Fiction Books for 2016: Guest Post by Sandy Ho

Reading fiction is where and how I derive my energy.

There is something centering about getting absorbed into a story, and 2016 has been a year where feeling grounded has been a strategy for survival: whether escaping from headlines, or “to-do” lists.

Over the past few years I’ve made an intentional effort to not read consecutive books about the same place, or the same types of people, or by authors of similar identities. I read to gain perspective because as much as it is a way to pass the time, it’s also an enjoyable way, for lack of a better phrase, to exercise the heart and mind.

So my reading isn’t driven by any one particular agenda, and the presence of disability doesn’t make or break my decision to read a book. Since I don’t “read for disability” when disability does come up, it’s typically a refreshing surprise! I’ll admit I’m a picky reader, and many times the “latest book everyone else” is reading will be one that I can’t stand (Sorry… Gone Girl). This means that the majority of my selection choices are based off of browsing for hours at the library or the neighborhood indie bookstore.

Below is a list of Top 15 Fiction Books whose stories have stuck with me between all of the outrage and heartbreak that 2016 has witnessed. I figure if these stories have lingered in my mind throughout a cacophonous year it’s probably a pretty significant story in someway!

(These are not listed in any particular order. * = presence of disabled character in the story.)

 

1.) A Long Way to a Small Angry Planet by Becky Chambers *

Read If You – dream about living on another planet and pursue social justice with a passion.

Gift to the person – who loves sci-fi, doesn’t matter if they’re a Trekkie or a Star Wars fan!

 

2.) Burial Rites by Hannah Kent

Read If You – enjoy winter and murder stories; takes place in the 1800’s, based off of the actual woman who was the last person publicly executed in Iceland.

Gift to the person – who is a lover of nature and history.

 

3.) God Help the Child by Toni Morrison *

Read If You – don’t have time to sink into something long-winded: a blue-black skinned girl is born to a light-skinned mother, how one treats the other will not only impact just these characters.

Gift to the person – who has been going through tough times with their family or relatives.

 

4.) Turtle Moon by Alice Hoffman

Read If You – want to know what magic lies in the swamplands of Florida besides the story of a runaway teen, and a kidnapped baby.

Gift to the person – well-balanced between the ground beneath their feet, and the clouds.

 

5.) Too Bright to Hear Too Loud to See by Juliann Garey *

Read If You – want an atypical adventure story as a bipolar man retells his world travels while getting electroshock treatments.

Gift to the person – who is the eccentric happy-go-lucky type.

 

6.) Here Comes the Sun by Nicole Dennis-Benn

Read If You – would like to meet 3 no bullshit women you’ll wonder where they’ve been all your life; Montego Bay setting is a minor perk next to their radiance.

Gift to the person – who is vivacious and is always going to ‘do their own thing’

 

7.) Frog by Mo Yan

Read If You – are curious about how a single social policy in communist China winds it way to impact marriages – abortions – midwifery – national loyalties.

Gift to the person – up on the latest international conflict.

 

8.) Infinite Home by Kathleen Alcott *

Read If You – need a reminder that family is also composed of the people you choose.

Gift to the person – who is your “ride or die,” or someone you’d like to tell “I’m here for you.”

 

9.) Mislaid by Nell Zink

Read If You – would be humored by a more absurd plot than whatever Trump is tweeting; beginning in the 60’s this is packed with witty commentary on sexual orientation and race relations.

Gift to the person – who has been a free-thinker since Nixon.

 

10.) Oil on Water by Helon Habila

Read If You – want to explore the Nigerian Delta from the perspective of two journalists whose mission is to report the story, and find the wife of a British oil exec.

Gift to the person – consistently reading the news.

 

11.) About Grace by Anthony Doerr

Read If You – want to learn more about snowflakes, or wonder what it would be like to see, and then escape the future.

Gift to the person – in your family who would do anything to save all of you.

 

12.) The Time Traveler’s Wife by Audrey Niffenegger *

Read If You – want your heartstrings pulled, and wish winter could fly by as quickly as these 500+ pages surely will.

Gift to the person – newly in-love, not the “so like, I have a crush”-way but that committed-for-life kind.

 

13.) Homegoing by Yaa Gyasi

Read If You – want a structure of a story as impressionable as the way slavery ricochets thru this family tree, and becomes anchored to the spaces of each generation.

Gift to the person – burnt out from mobilizing around racially driven conflict that has happened, and that will come.

 

14.) A Little Life by Hanya Yanagihara *

Read If You – want to be pushed to the extremes: wincing psychological trauma, and cheer on (be jealous of? be frustrated by?) complex prodigious bonds of friendship.

Gift to the person – you are certain without a doubt has a backbone of steel, and is fiery with warmth in the cockles of their heart.

 

15.) The House on Mango Street by Sandra Cisneros

Read If You – like me, never read this in school, or read it in school but you’d probably appreciate it outside the classroom even more now.

Gift to the person – just moved to the United States, or an anxious young person beginning a new lifestyle.

 

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top 15 books for 2016Follow Sandy!

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Talking about “Top Books” is always a hard call for me. Remember, I’m the daughter of two people who, when they decided to move to the South Pacific, brought something in the area of 36 boxes of books… and two small suitcases for clothes. It’s harder still to choose books that truly help in understanding disability better.

The books I’m listing here are ones that personally helped me most in my learning and understanding disability – disability as a subject, as a matter of personal pride, as a movement, as an action and as an opportunity.

My Pick of Books to Help in Understanding Disability:

No Pity : People with Disabilities Forging a New Civil Rights Movement

This is really a must-read, I think. Powerful, engaging. Very well written, comprehensive. A basic primer for anyone who is an advocate – or interested.

 

The Ragged Edge: The Disability Experience from the Pages of the First Fifteen Years of The Disability Rag.

An intense collection of stories, personal narrative that captures and conveys the experience of being a person with a disability in America today.

Two books go together here:


The New Disability History: American Perspectives (History of Disability)
Why I Burned My Book and Other Essays on Disability (American Subjects)

These books packed the same type of WALLOP for me that ‘No Pity” did – “The New Disability History” is also a comprehensive history of disability – cross disability. “Why I Burned My Book” talks of the search for heroes, public policy and more. Again, comprehensive. Far reaching. Essential reading for advocates, people with disabilities and those involved in the disability field.


Nothing About Us Without Us: Disability Oppression and Empowerment

This book pushes the reader to “recast many assumptions we might hold about disability in relation to human rights” (- Lennard Davis). It’s broad, comprehensive, and on the international disability rights movement.


Waist-High in the World: A Life Among the Nondisabled

A memoir from one of my favorite authors. One of the first books about being a parent with a disability that I read. Beautifully written. Poignant. Candid. Lovely.

 

 


Moving Violations: War Zones, Wheelchairs, and Declarations of Independence

Another memoir that I loved by an outspoken, well spoken smart and funny professional journalist who is a paraplegic.


Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights

“Everyone cares for disabled people, right? What they don’t care for are the genuine civil rights for disabled people…” (-William Greider). This book was an eye-opener for me in my early learning on what “disability rights” really means – and the complicated pieces that are involved.


Signs of Resistance: American Deaf Cultural History, 1900 to World War II (History of Disability)

I am deaf. I grew up mainstreamed. I can barely sign and I felt an intense shame for most of my life for the fact that I just can’t hear. It was exhilarating to chomp my teeth on deaf culture and history.

If You Could Hear What I See

A memoir from a Deaf comedienne. One of the first Deaf memoirs I read and enjoyed. On the lighter side.

 


The Diary of Frida Kahlo: An Intimate Self-Portrait

This is another memoir of sorts. I liked the punch it pulls in terms of moving through life with colour and beauty – despite what else might be happening.

That’s inspiring to me.

 


The Ugly Laws: Disability in Public (The History of Disability)

This feels particularly relevant in the here and now in which we are fighting for IHSS, for healthcare, struggling against some pretty basic disability discrimination.


The Disability Studies Reader

I like comprehensive – I’m sure you’ve noticed that already! This is another comprehensive book – it’s really a comprehensive overview for disability studies, “the collection covers cultural studies, identity politics, literary criticism, sociology, philosophy, anthropology, the visual arts, gender and race studies, as well as memoir, poetry, fiction, and prose non-fiction.”

There you have it. Those are my Top 13 .What are yours?

PS

You might be wondering where the Down syndrome books are?

I don’t honestly think that they have a place here on this list, as they are written by parents of people with Down syndrome – they are stories of the parents coming to terms with disability and the place that Down syndrome holds in their world. They are for a specific slice of disability but not necessarily for disability or written from the perspective of one who has walked the walk.

None the less, the books that I truly loved are in the “Book Resources” section here on this blog.

 

 

You know it and I know it: Kelle Hampton is hugely popular. She writes marvelous fluff on her blog, Enjoying the Small Things. I think she is an adroit blogger, able to weave remarkable bits of fippery in and around drop-dead awesome photos. The result? A top-notch blog.

 

A top-notch and popular blogger does not, however, make for a good book author. In fact, I thought Bloom was one of the worst books I've ever read. The reviews said it was "raw and honest" and I thought that was just a new way of saying "really badly written." Moreover, Kelle Hampton has a pretty charmed life over there in Florida. The birth of her daughter with Down syndrome kicked her hard, but… her daughter had no health issues and Kelle had a ton of support – both items that most parents of children with Down syndrome can't relate all that well to.

 

Here, therefore, are my Top 5 Recommendations for books other than Bloom to read for the new parent, books that have much for new parents to relate to, and books that personally helped me a hell of a lot.

 

1. Expecting Adam, by Martha Beck

This one knocked my socks off.

One of my all time faves, ever, for any book category.

Martha Beck is hilarious with a deep, compelling story. She mixes the spiritual a lot within her memoir – but since I'm of the spiritual bent, it worked well for me.

Note: it's spiritual, not religious; Martha dropped out of the Mormon church quite a while before her son was conceived. She writes a lot about coming to terms with having a child with an intellectual disability (like me, she had a prenatal diagnosis and also like me, she considered abortion), but does so utilizing elegant prose, well crafted sentences, turns of phrase and liberal layers of humor and wit.

It's a well-crafted tome clearly written by a very intelligent, well educated woman.

 

I loved this book. I have re-read this book something like 3 times.

 

2. The Year My Son and I Were Born, by Kathryn Lynard Soper

Kathryn Lynard Soper is a practicing Mormon and went through a crisis of faith when she had her son prematurally, diagnosed at birth.

This book is raw, it is honest – and those are not euphemisms for "badly written"; because this story is skillfully told, unfolding with grace. I loved the said rawness and the honesty – about her struggle with faith, with her church. With finding herself and the love for her son despite his many medical issues, post-birth.

She writes of keeping her family whole, caring for her other (5 – or was it 6?) children while dealing with her son's issues, with her faith and with being completely overwhelmed.

Great book.

 

3. Gifts, edited by Kathryn Lynard Soper

It was actually when Kathryn was dealing with all of the issues described above that she saw the need for a compilation of stories by and for parents of kids with Down syndrome.

She collected those stories and edited them. The result – a must-read.

There is something in there for everyone, and it is tremendously comforting to know that no matter what you feel – you are not alone. There is a tribe for you to connect with.

There are people out there who understand.

Gifts 2 is also dynamite.

 

4. The Shape of the Eye, by George Estreich

George writes on par with Martha Beck – he's funny but make no mistake: this is not a light book. This is a book contains a plethora of sentences that are so richly strung, they make you stop and mull over them for minutes, days.

He's definitely for the analytical types out there, the type that enjoys tearing apart history, thinking of underlying meanings. His daughter also had some health issues, which he speaks of in addition to his own struggles with depression and having a bi-racial identity.

Beautifully written.

 

5. Roadmap to Holland, by Jennifer Graf Groneberg

I wasn't crazy about this book when I first read it, thinking she was just trying too hard, that her sentences weren't flowing the way I thought they should. But you know what?

Screw it.

A lot of people could relate to this story.

And maybe it is good that it's on the lighter side of writing, it's easy for anyone to read. The premature birth of her twin boys led to the surprise diagnosis of one of her boys. He had a number of health issues, which she grapples with along with trying to deal with having a child with Down syndrome – and the accompanying prejudices she encounters, her struggles through small town Montana life and a child with special needs.

 

6. A Good and Perfect Gift, by Amy Julia Becker

Yeah, I know, I said "5 Books", but I have to include this one too – so consider it a bonus!

Amy Julia wrote a book that many, many in the Down syndrome community can relate to as many, many in the Down syndrome community are Christian and Amy Julia comes from a very Christian place.

What I – non Christian that I am – liked was that Amy Julia is the type of hard-thinking, deeply-believing Christian that goes way past the superficial in her faith – down to the actual application of teachings of Christ.

She does a lot of that – faith analysis and application – in her book and frankly, I enjoyed it.

****

For more reviews, check out the T21 Writer's Alliance.

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