Down Syndrome

Hi, my name is Ashley7Amara. I'm here because my daughter has DownSyndrome and want to educate myself as much as possible to help her be successful

#MightyTogether #DownSyndrome

The term ‘Experience Disability’ was first explored at elementary school in Georgia. It was a one day event and grade by grade, the children moved through various stations of experiences. At one table they wore glasses smeared with vaseline and were asked to read. At another, they were given marshmallows to fill their mouths and then they tried to speak. There were wheelchairs and crutches to maneuver and a secret told to ears full of cotton. They were given headphones playing loud static noise and encouraged to try and answer a question. Each station was designed to expand their understanding of being disabled. It was an incredible perspective-changing experience for both the children and their teachers.

Not everyone has the opportunity to actually experience disability but we can immerse ourselves in words and images. Through this list of highly-rated new and classic fiction and nonfiction books, readers of all ages can experience what is like to be physically, emotionally and mentally challenged.

Disability Visibility: First Person Stories From The Twenty-First Century

Edited by Alice Wong,

A collection of true life experiences told by

individuals with disabilities

Flowers for Algernon

by Daniel Keyes

Classic novel about an experiment gone right then wrong

True Biz

by Sara Novik

Students and teachers at boarding school for the deaf

and their struggle in a mainstream world

Fish In A Tree

by Lynda Mullaly Hunt

A student tries to hide their learning disability and finds redemption

Stones from the River

by Ursula Hegi

A woman with dwarfism navigates life during World War I and II

The Sound and The Fury

by William Faulkner

Complex southern novel with a first person account told by a sensitive young man with an intellectual disability

Laughing at my Nightmare

by Shane Burcaw

Living in a wheelchair viewed with humor and candor

The Curious Case of the Dog in the Nighttime

by Mark Haddon

An English teenager with “differences” solves a

mystery and discovers even more

Of Mice and Men

by John Steinbeck

Two migrant working friends, one with an intellectual disability, face a callous world

Haben: The deafblind woman who conquered Harvard Law

By Haben Girma

The inspiring true story of a lifetime of determination told with warmth and wit

And 10 Notable Children’s Books

The Planet Earth is Blue

by Nicole Panteleakos

A nonverbal girl and her passion for space

Dancing with Daddy

by Anitra Rowe Schulz

A young girl in a wheelchair anticipates an upcoming dance

A Storm of Strawberries

by Jo Cotterill

First person narrative by a 12-year old with Down syndrome who loves chocolate and dancing

El Deafo

by Cece Bell

Cece is deaf with superpowers and both present

interesting and funny events

A Walk in the Words

by Hudson Talbott

A boy with dyslexia struggles with words and finds solace in nature

The Beach is Loud

by Samantha Cotterill

A child with Autism struggles with the reality of noise

A Sky Blue Bench

by Bahram Rahman

A young Afghan schoolgirl resumes school after an accident disables her

My City Speaks

by Darren Lebeuf

A visually-impaired girl explores her city

using all of her other senses

A Bird will Soar

by Alison Green Myers

A bird-loving boy with autism finds an eaglet

It’s Okay to be Different

by Todd Parr

A picture book for youngsters about embracing our differences.

As a parent of a child with a disability and a former teacher and children’s librarian, I believe that books can create awareness and acceptance of all the wonderful uniqueness in this world.

Originally published here: www.gracesigns.org/post/experience-disability-in-books

I had a glimpse of my future self last week in the parking lot of our local Meijer grocery store. An elderly Mom was walking towards her car with her adult son who had all the telltale characteristics of Down syndrome. He was quietly walking beside her and looked to be in his 40’s or 50’s, with hair thinning. She first helped him get into the car, she helped him buckle his seatbelt, and after he was safe she loaded her groceries into the vehicle. Younger me may have felt my heart begin to beat faster as I projected forward to that chapter of my life. Wiser me just smiled and recognized how beautiful it is that they have one another. Seeing them together brought me joy.

And do you know why that is? Because fifteen years into this journey there is no fear anymore. Not one single ounce. I am so far past fearing the diagnosis and all that can come with it. But in the beginning it was heavy. Imagine being told, within the first few hours and days of your newborn’s life all that he won’t ever accomplish. All the limitations or possible complications. All that he won’t be able to do on his own. You don’t need to wonder then why new parents instantly feel the weight of the diagnosis on their shoulders and are scared to death.

But fifteen years into our journey together, this is what I know for sure. The Down syndrome diagnosis just is. It’s not good. It’s not bad. It just is. No need for labels. It’s simply another way of being, another way of walking on this earth in a body. Individuals with Down syndrome are as unique and complex as the rest of us and they have just as much value as you and I do. Perhaps even more so. I assume people think we parents say these kinds of things to put a positive spin on what others perceive as heartbreaking and scary and sad, just to make ourselves feel better. But I am simply sharing what is my truth.

Please understand that I speak only for myself because every person’s special needs journey is unique. Some may never get to this realization. Yet I know that I’m not the only parent who feels this way. So many of us do get there. That’s the gift of time. Understanding the blessings that come with the diagnosis. You just have to get past the fear. Fear of the unknown. Fear of the complications. Fear of how society will treat your child. And on the other side of that fear? There is joy. During the first week of high school there was a Dad dropping off his son with Down syndrome at the same time I was dropping off Luke. As our boys walked away, he turned to me and said, “Such a blessing, right?” And he made us both cry. Because it’s true.

I believe that Luke’s diagnosis is actually like an amusement park fast pass. How lucky am I that I don’t have to wait until the end of my days to realize what’s really important and what this earth walk is all about. Luke took me to the front of the line. He shows me daily what matters most. And what exactly is that? It is to be at peace with yourself. To love yourself, exactly as you are. To take pleasure in the simple things. To not stress and worry about everything. To love unconditionally. To not hold onto grudges or anger. To wake every single day and find joy in the little things. To want others to be happy. To not NEED stuff. To not NEED to impress. To not NEED to be noticed. To simply spend time with the ones you love. To be present. To simply be.

At some point in the past, long before Luke’s birth, I was introduced to Eckhart Tolle’s book A New Earth. In it, he explains that, “Life will give you whatever experience is most helpful for the evolution of your consciousness. How do you know this is the experience you need? Because this is the experience you are having at the moment.” After receiving Luke’s diagnosis of Down syndrome, I remember screaming into the universe, “I DIDN’T SIGN UP FOR THIS!!!” Screaming it. The heartbreak was real. The diagnosis felt that overwhelming. Yet here was Luke, my beautiful little boy, just needing to be loved exactly as he is. So that’s what I learned to do. Just love him and not try to change him, because there’s nothing that needs to be changed. He is exactly who he is meant to be. And over time, a wonderful thing happened. Along the way, I discovered myself. I discovered what is really important. He changed me. Luke is exactly who I needed to love for me to evolve into who I came here to be. How simple and beautiful is that? See the blessing. Absorb the blessing. Radiate the blessing.

Part 1 of 2 I am still in my pajamas at 10am on a Wednesday. Scrolling through my FB feed, sipping coffee.

The epitome of a mom totally off-kilter from daylight savings time, peeved with Winter. Who decided to finally show up in March, bringing cold temps and relentless winds. Basically, I am riding the lazy train today. It’s cool. Needs to happen every once in a while.

Anyway, I am seeing the kind of posts that pop up in my feed this time every year. It’s World Down Syndrome Day on March 21st. I see the posts celebrating it; and I see the posts not celebrating it.

Two sides generally. The one about how great life with Down syndrome is; and the one about how parents wish Down syndrome was not a part of their child’s chromosomal make-up.

Validity to both sides.

That’s simplifying it a lot. There is a lot of education and advocating being shared too.

But it occurred to me, after reading a particularly vulnerable post from a mom about her child, that my opinion about WDSD does not fall into one of those two categories. For me, it is about shifting the narrative. My opinion is that my child is made as she is meant to be. She is a perfect conglomeration of her parents, with roots from generations of family genes that came long before her; and, she has a spark of something extra. A whole extra 21st chromosome to be exact.

My child with Down syndrome is meeting many milestones; and most days, I forget that she has Down syndrome. But that’s not why I don’t hate this diagnosis. Believe me, I have experience with a genetic make-up that reminded me every day that my child was not typical.

My first child was beautiful. Amazing. A. Wonder. She changed people–for the better. She taught people–without speaking a word. She imprinted her spirit on the lives of so many people. It was a good life. But it was heavy, complicated, and freaking exhausting. There were multiple medical specialists in our lives, she was profoundly delayed in all the developmental and cognitive areas, and she had so much medical complexity that doctors couldn’t quite figure her out.

I spent my days wishing she didn’t have the genetic condition she had. I felt that she deserved a better life.  Because that’s what we are taught in this world. That disability, medical complexity, cognitive delays—these things equal a bad life. It’s not true, but it took me a lot of time to come to that conclusion; long after my first child passed away and my second child was born.

When I became pregnant with my second child, I was terrified to repeat the same experience. I spent those first few weeks of pregnancy wishing and praying that she would not have the same genetic condition as my first child. I breathed a sigh of relief when the doctors said that she did not. However, they informed me, that she did have Down syndrome.

And, in my less than infinite wisdom about Down syndrome, I was terrified, and heart broken. I hoped and prayed some more. Specifically—that they were wrong.

Even after she was born, I sort of thought they’d just skip on up to my bedside and tell me, “Oh, by the way, she doesn’t have Down syndrome after all, enjoy your perfect future”. Seriously though, fear played a huge role in my denial about the diagnosis of Down syndrome. That fear was rooted in my past traumatic experiences and loss with my first child; and it was buoyed by the misconceptions and lack of understanding about Down syndrome that is propagated by the world we live in.

I didn’t think I could lose another child without losing myself entirely. Because that’s what I thought would happen based on the doctor who “educated” me during my prenatal diagnosis—that my baby would have a heart defect, have little quality of life, and possibly die.

But here she is, five years old and super freaking amazing. And, after having two kids with genetic differences from the “norm”, I finally get it now. Having Down syndrome isn’t an automatic ticket to the hard life. And not having Down syndrome isn’t an automatic ticket to a life on easy street.

But somehow, this is the idea that so many of us have. If our child just didn’t have that extra chromosome, she could do all the things. But, shoot, life just isn’t that one dimensional. Life is messy, complicated, and heavy for most of us, regardless of chromosomes. And, for those of us that have more unique situations—parenting a child with a disability—our loads tend to feel messier, more complex, and much heavier. Probably because we are more isolated, and we lack the unspoken comfort that comes from moving in step with the crowd along the same journey.

That is one of those things

Part 2 of 2 that I wish was different about parenting a child with a disability—the isolation from the rest; and the feeling that our children are not and will not be supported and accepted by anyone but us.

Having that extra genetic material or not having it is not what determines quality life or contributions to this world. And it sure as hell doesn’t determine worth. But there is this underlying theme that not having Down syndrome, or any disability, really, would be better than having it.

And I think that’s where we are getting it all wrong. It’s not about what we are born with, but the world we are born into. Currently, in our society, by many people, life with disability, medical struggle, and/or mental health struggle is still viewed as less than. It may be freaking difficult at times, but it is not less than. The world we live in is so deeply marked by stale ideas and practices that continue to put people with disabilities in the shadows.

So, I don’t hate Down syndrome or wish it away. I don’t even hate my first daughter’s genetic anomaly (anymore). Because, to me, that’s not the problem that needs to be solved. How this world accepts, acknowledges, and supports all the people in it, including those with disabilities, that’s the problem that needs to be solved.

I want a better healthcare and mental healthcare system in place to support our disabled community. Hell, to support the caregivers too! I want supports in place to help guide parents and caregivers as they navigate a journey caring for their

loved ones without them experiencing the isolation and burnout. I want a network of friends, family and perfect strangers to lift up my child, any child or person with disability, so that she can take her seat at the table with them and, together, they can enjoy meaningful interactions.

I want to celebrate World Down Syndrome Day not just because I accept and appreciate every chromosome that makes up my child; but, also, to shift the narrative. To acknowledge that human differences contribute to the whole picture of life. To spread the idea that human worth is not determined by chromosomes. To help create an opportunity for dialogue and bolster understanding—breaking down insecurities and fostering a growth of empathy and acceptance.

I am only one person. I know. But the flutter of a butterfly’s wings…

And, it needs to be said that it’s okay if there are parents out there in our Down syndrome community who just aren’t in that place to celebrate, advocate, or fight right now, for whatever reason—life as a parent of a child with a disability is heavy. I am here, and I will help carry you through my words and intentions if you need me.