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#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!

susanIn the spring of 1977, I took a quarter off from college, quit my job, and with my best friend bought a 1966 VW camper van to explore the United States. Before we left we spent a warm April day (California was in a drought and Jerry Brown was governor, how odd!) practicing the manual shift on the hills of San Francisco. We figured that if we could manage the hills of SF in the bus, we could manage it anywhere.

As we drove into the Civic Center we noticed a protest—not a rare occurrence in the Bay Area, but this protest was unique because the people protesting were people with disabilities. I admit that as an abled-bodied teenager, I didn’t have a clue what the protest was about but learned from the local news that protestors were demanding that the Carter Administration issue regulations implementing Section 504 of the Rehabilitation Act of 1973. It made perfect sense and it opened my eyes to disability discrimination.

Fast forward 38 years to 2015, and we’re celebrating the 25th anniversary of the Americans with Disabilities Act of 1990 (ADA), the glorious result of the disability community’s historic campaign to expand the protections of Section 504. In those intervening years I acquired a disability and had the incredible fortune to go to work at the Disability Rights Education & Defense Fund (DREDF), first as its administrative director and now as the executive director.

DREDF was instrumental in the passage of the ADA, with Pat Wright as the leading political strategist, Arlene Mayerson drafting language and providing legal consultation to members of Congress, Marilyn Golden organizing people with disabilities nationwide, and Mary Lou Breslin providing the vision, intellect and historical context to DREDF’s work. In 2014, Senator Tom Harkin said about DREDF, “No group has been more instrumental in advancing the cause of civil rights for all people with disabilities than DREDF.”[1]

The ADA is beautiful—what it has accomplished is spectacular.  It has led to the removal of many, many architectural barriers, more accessible public transportation, made it illegal to discriminate against people with disabilities in employment, an increasingly accessible Internet, more equitable delivery of health care, and much, much more.

I have savored the ADA’s impact on our social consciousness in small but beautiful personal moments:

  • In 2005, when my oldest son called from college to tell me that after an overhaul of the online game Star Wars Galaxies wiped out the ability of many players with limited dexterity to use “keyboard-only” commands, there was a major outcry on player forums to correct the programming so that players weren’t excluded.

Players with and without disabilities recognized that the upgrade had usurped the perhaps inadvertent though nonetheless universal design of the original game. I was so happy about the gamer community understanding access and inclusion that I barely even questioned my son about why he was spending time playing video games when he should probably have been studying.

  • In 2010, when my stepmother called to say that it dawned on her that she could insist (gently, according to her) that Amtrak allow my father to sit on the lower level of the train because he was no longer able to safely climb or descend the stairs.
  • In 2012, when my youngest son, who was working at a movie theater called to tell me that after he heard that the chain’s management had moved “The Sessions,” a film based on Mark O’Brien’s essay, “On Seeing a Sex Surrogate,” from the first floor accessible theater to an inaccessible upstairs theater, he had called the Los Angeles headquarters to let them know that they were moving the film back to the first floor theater.

It is beautiful that the ADA has been used to:

  • Enshrine the right of people with disabilities to receive public support and services in the community instead of institutions pursuant to the Olmstead decision;
  • Keep families together (see the National Council on Disability’s 2012 report on the rights of parents with disabilities, Rocking the Cradle);
  • Ensure that online streaming videos (see the case that DREDF brought against Netflix) include captions so that people who are deaf and have hearing loss also benefit from and enjoy their content;
  • Promote inclusion in school for children with diabetes through a state Supreme Court opinion that determined that trained personnel or volunteers who do not hold a medical license can administer insulin in schools. The decision also means that people can remain in their homes and have attendants administer medication instead of being driven into a medical facility; and
  • Spark the enactment of disability rights laws around the world, and be a model for the U.N. Convention on the Rights of Persons with Disabilities.

There are so many more remarkable outcomes that I could add to this short list (I invite you to add to the list by using the Comments feature), and undoubtedly there are more to come.

I am excited to see how disability rights advocates and activists, in the tradition of the 504 protesters and everyone who worked to pass, implement and enforce the ADA, will use it to expose and eliminate lingering discrimination, increase opportunity and secure equality for people with disabilities.


susanhenderson1About the author: Susan Henderson, Executive Director, Disability Rights Education & Defense Fund

Susan Henderson joined Disability Rights Education & Defense Fund (DREDF) in 1997. In addition to her executive director responsibilities, she directs DREDF’s Parent Training & Information Center, which is funded by the U.S. Department of Education. In 2004, she started DREDF’s Foster Youth Resources for Education (FYRE) project to heighten awareness and protect the rights of children with disabilities in the child welfare system. In 2007, she established DREDF’s Disability and Media Alliance Project (D-MAP) to address the misinformed disability coverage that undermines public policy and legal advances to coverage that raises public awareness and helps to end disability discrimination. She works internationally with other disability-led organizations to conduct workshops on disability and human rights in Bahrain, Columbia, Guam, Japan, Jordan, Kenya, Kuwait, Tanzania, Uganda and Vietnam.

Susan worked for 13 years as part of the cross-disability team that planned, designed and constructed the Ed Roberts Campus (ERC), a universally-designed building in Berkeley, CA. She currently serves as the president of the ERC board. She has worked in non-profit and law firm management and finance for over 20 years and has an MBA and a BA in Anthropology.


[1] Senator Tom Harkin, Remarks at an Event Honoring the History and Legacy of Senator Tom Harkin and Representative George Miller, Berkeley, California, September 3, 2014.

This post originally appeared on Disability.gov

I was listening to a story recently of a woman who became pregnant with her first child when she was just 16. My mouth sat open wide as she explained how hard she had to fight to keep her baby, being a “good Catholic girl” in the 1960s.

It was the norm back then. Young mothers pulled out of society and whisked ‘away’ somewhere to either have a termination or disappear for a while until the baby was born only to be forcibly removed and given up for adoption. These sorts of practices were commonplace and considered to be ‘for the best’. This woman had all sorts of so-called experts in her ear, from the local priest, the doctors, family and friends weighing in on what was best for her, the baby and ‘good taste’ apparently.

It’s not like that anymore.

Society has realised over the past 50-60 years that it’s not the end of the world if a young mother has a baby, actually. We know that tearing children from their mothers and raising them in foster homes or boarding houses away from them is not the recipe for a well-rounded upbringing.

We know that so we don’t do it anymore.

In the story, the woman recalled how her son was called a “bastard” purely for being born to an unwed mother. She talked about how little support she had and how hard it was back then. This woman was a trail blazer, refusing to be told what was best for her and being a part of change that would bring us to the better place we live in now.
No one looks back at those times and considers it ‘Best Practice’. No one looks at the damage done to young mothers and their children as a result of forced separation and uses that to advise young mothers today.

We know it is better to support parents through challenges rather than demonising them for their choices. We know that when we stop telling children they are ‘worthless bastards’ who should never have been born, they grow up having more pride, confidence and control over their lives.

When a young girl becomes pregnant at 16 today…we don’t go looking to the 1960s for advice…

….so why are we still doing it with Down syndrome?

A Down syndrome Diagnosis

When parents receive a prenatal Down syndrome diagnosis, the information and advice given by many health professionals is wildly outdated and skewed heavily on the side of Doom and Gloom.

When parents get their results they are told all about the physical, developmental and health conditions that MAY come with the extra chromosome. They are given the worst case scenario even though it probably won’t be their reality…just in case it is.

It is important that doctors tell parents about the increased chance of medical conditions and the likelihood of intellectual disability. It would be negligent not to. Parents need to know what may over the horizon for their child medically and be best placed to intervene or treat it.

The problem is, health professionals are not giving the other side too. I have heard people in the medical world describe how it is considered to be ‘painting too rosy a picture’ or ‘romanticising’ Down syndrome if they tell parents about the potential positives or about the support services available before they have decided whether to continue with the pregnancy.

As though it is ‘for the best’ if people don’t get their hopes up about what their child may be capable of before they make a decision.

Potential difficulty and heartache?….think long and hard about it even if it might not happen.

Potential happiness?…..best not to think about it in case it doesn’t happen.

If it is prudent to give parents the worst case scenario about health and development, it should be equally prudent to give the information about what help and support they can access. It’s not biased to give positivity and hope as well.

Why do parents have to wait until after they have decided to keep their baby before they are allowed to discover that the vast majority of families love and cherish their kids and wouldn’t change them for the world. To learn that early intervention principles, health advances and inclusion means that the kids born today will have longer and healthier lives than those born 50 years ago? To learn that different doesn’t necessarily mean bad and people with Down syndrome can and do live happy, meaningful lives.

The positive and negative information should go hand in hand…not handed out separately after parents have chosen their path.

Yes, by all means, tell parents that if their child has Down syndrome, it may take longer to reach developmental milestones and speech may be difficult….but also tell them that there is early intervention available and with regular physio and speech therapy, their child will develop and learn. Tell them about the state based Down syndrome organisations that are there to support them. Tell them about funding packages, respite, support groups, therapies and help lines.

Yes, tell parents that Down syndrome brings a higher chance of congenital heart problems….but also tell them that many issues resolve themselves or the surgery has an extremely high success rate with kids going on to flourish afterwards.

Tell them that some children have many complex health issues….but also tell them that many have no health problems at all. Tell them that everyone with Down syndrome is different and unique and not everything on the long list of ‘maybes’ will apply to them.

Yes, tell parents that their child will have some degree of intellectual disability and may face challenges….but also tell them about how much we are learning about how the brain can learn and make new connections. Tell them that there is a new family of incredibly supportive parents out there who can help them see how amazing our kids are and show them what is possible. Tell them that Down syndrome won’t define who their child is.

Yes, tell them that their child has Down syndrome….but don’t use the stereotypes from the 1960s as examples. Parents need current up-to-date information to understand what Down syndrome is today. Tell them about the army of pioneering parents who fought to keep their children at home and out of institutions.

Tell them about the parents who demanded their children be taught in mainstream schools or receive therapies that would improve their development.

Tell them that in the 1980s, the life expectancy for people with Down syndrome was 25. Today it is over 60.

Tell them how much has changed since the 60s and is continuing to change.

But tell them before they have made a decision….not after.

Don’t withhold this equally important aspect in a sealed envelope only to be handed over once a parent has decided to proceed. It’s not up to health professionals or the media or anyone else to decide what information is ‘for the best’. Parents should be respected enough to have all the facts in order to make decisions for themselves.

It’s not the 60s anymore.

It’s not ok to tell parents that their child will never walk, talk or learn anything. Mainly because we know it is not true for the vast majority of people with Down syndrome but also because it’s not ok to set parents on this path with dangerously low expectations of what their kids are capable of. No one can guarantee any child’s future but they have a much better shot at a bright one if people invest in and nurture their talents instead of expecting absolutely nothing from them from the day they are born.

A lovely couple came over to chat with Wade and I recently and tell me about their son who is 26 and has Down syndrome too. The man said the most beautiful thing to me…

“People always talk about how bad the world has become. They’re wrong. The world is a much better place for the kids now, much better than when my son was a child.”


leticia keighleyBIO:  Leticia Hodson is a writer from Melbourne, Australia.  She writes at her blog Embracing Wade about the lessons learned from raising her son Wade who has Down syndrome.  She also advocates for change as well as showing how very very normal her life is at her Facebook page too.


The hands of people can tell you many things. The hands of those with Down syndrome are no different.

Beyond the insight provided from palm reading, noticing a person’s hands can tell you a bit of their story: dirt under the fingernails of someone who works in the garden; calloused palms of someone who pulls ropes on a ship; soft hands from typing on a keyboard all day in an office (like mine). For people with Down syndrome, their hands can even suggest their diagnosis pre- or post-natally–but their hands say a lot more than that.

Clinodactyly & Single palmer crease

Prenatally, one of the soft markers for Down syndrome is a shortened pinky finger, which may curve inward, termed clinodactyly. This is a “soft marker” because such a finding by ultrasound is not definitive for any chromosomal condition, but taken with others can suggest an increased likelihood for Down syndrome.

Postnatally, a common characteristic pointed out to parents is the single palmer crease. With most people, they have two major lines across their palms. With some people with Down syndrome, they can have a single line across their palms. It was explained to me that this happens possibly due to the hypotonality that most individuals with Down syndrome have, so that in the womb, as they move their hands, they open and close them in a more 90-degree way, than the curving in of others, resulting in a single crease.

Unfortunately, this characteristic has historically been termed a “simian crease” or a “simian line” due to other primates having a single line that runs across their palms. I’ve had more than one father say they wanted to punch the medical team member for associating “simian” with their newborn baby. I would hope “single palmer crease” replaces “simian crease” as “intellectual disabilities” has replaced the “r-word.”

What their hands do

But aside from a short pinky and a single crease, there is so much more that the hands of people with Down syndrome can tell us.

I had this thought this past Sunday while observing my daughter’s hands at church.

I watched

  • how she used her index finger to follow along with the words in the hymnal;
  • how her other hand was clasped as though she was holding a microphone, because when Juliet sings at home, she uses a karaoke machine to sing along;
  • how she held the small pencils in the pews as she worked through a seek-and-find;
  • how she turned the pencil around and around in her fingers in one hand; and,
  • how she intertwined her fingers as she prayed.

Following along and singing the words of hymns were the result of years of inclusive schooling and work at home teaching Juliet to read. Those fine motor moves–holding a pencil and twirling it–was the result of hours and hours of occupational therapy. As Juliet sang and prayed aloud, I also thought how the first way she communicated with us was using her hands for sign language.

mark leachWhat do you see?

When Juliet was born, and her pediatrician talked about the single palmer crease and small pinky fingers associated with Down syndrome, that became my focus. But, now, 10 years since her birth, I notice those characteristics less. Instead, I marvel at all the things her small, soft hands can do.

I suspect that is the case whenever a diagnosis is given. A diagnosis is reductive. Before the diagnosis, your child is this being of unlimited possibilities that you spend your days dreaming about what he or she may do. After the diagnosis, your child is reduced to being just the medical condition and the possibilities seem limited.

But, given time, the fullness of your child returns. The diagnosis just becomes another part of her, but not the defining part of her, and you again marvel at all that your child can and will do.

My daughter’s hands told us about her having Down syndrome. They tell us so much more than that now.



Mark W. Leach is an attorney in Louisville Kentucky who serves as the bioethics specialist for the National Center for Prenatal & Postnatal Down Syndrome Resources. This post appeared originally at his blog: http://www.downsyndromeprenataltesting.com/.

I am delighted to be guest posting over at To the Max today, on the Parents website. It's a post called,

What People With Down Syndrome Bring To The World: EVERYTHING and I hope you will go over there and read it.

For those of  you that are visiting here from reading my post there, welcome! I have to say, your timing is impeccable, coming by for a visit right when I'm hosting a celebratory giveaway!


It's good to have you and I hope you will stay awhile and we can get to know each other.


A quick blog introduction: this blog is organized into 3 categories: Disability, Travel and Family. If you want to read just one category (or another), simply stay in that section. If you'd like to read more posts on any of the categories, just search the blog for what you are interested in. I'm still catching up on reformatting my 1,000+ posts, so some posts might be a little hard to read. Sorry about that.


We can also connect over on facebook, or on twitter, pinterest, instagram (meriahnichols)take your pick – I'm all over the place, but of course, it's just for you.


Month with Moxie: Celebration Giveaway

Moxie was born in May 2010 with a prenatal diagnosis of Down syndrome. She had already miraculously healed from her diffuse fetal hydrops and the holes in her heart. She was named "Moxie" as she had shown that she was full of it: courage. Verve. Vigor.


Moxie has challenged us to do the same: to live our life, our one precious life, with a little moxie.


This month is Down syndrome Awareness Month and we are celebrating a Month with Moxieliving life with moxie.

We have a host of awesome Awareness Champions that will be helping us all celebrate by giving you really cool products they made or produce (see below for the full list of the Champions).


Today's Champion is Bella Tu: Bella Tu means "beautiful you" in Italian, and this is what owner/creator Lisa says about her art:


The art of personal adornment is a way of fulfilling a deep longing for individual expression and beauty. I love making beautiful, fun, funky jewelry that brings joy to people and helps them celebrate who they are. I love that my pieces, especially the necklaces in my word pendant series, can serve as inspiration. To me, Moxie means exhibiting spirit, sass, pluck, or courage in the face of difficulty – and that, is always a beautiful thing to see.

Bella Tu Jewelry is giving away this gorgeous must-have necklace for any daring, plucky person!

This inspirational word pendant measures approximately 0.5" (1.5 cm) wide and 3/4" (2 cm) tall, is handcrafted in fine silver, oxidized, and then hung on a 18" sterling silver chain.

For your own order –
**Word pendants can be custom made. Choose your favorite word or name. The length of the word will dictate the size of the pendant. Message Lisa through her shop for more details **

For this necklace, just leave a comment in the rafflecopter below or in the comment box or on With a Little Moxie/facebook  –

What is beautiful to you?

a Rafflecopter giveaway


United States only; Giveaway ends Monday, October 8th at midnight, Pacific time. Winner announced Tuesday, October 9th.

For more on BellaTu:




Our Down syndrome Awareness Champions for this month are:

Another Celebration Giveaway will be held on Wednesday! Stay tuned.


Long before Kelle Hampton wrote a book called, “Bloom”, there was an awesome special-needs parenting blog called Bloom. It’s run by Louise Kinross of the Holland Bloorview Kids Rehabilitation Hospital (in Canada) and it is simply a “must”. A must for your blogroll – and if you can, read the magazine that they produce – not only is it very high quality but it’s a mixed disability bag, so it’s always interesting.

Today I am very happy to be guest posting there, my post on my brother Dana and our relationship.

If you are coming here from Bloom, welcome! I love meeting new people. To get to know more about us, please read the cleverly-titled “Who Are We” – it tells you a bit about our travel-heavy background, the history of this blog and so forth. “Disability: General Resources” is our overall philosophy on disability and some books and things that I like and have found helpful. “Posts on Down syndrome“, exactly that. Links to many, many, many posts on Down syndrome. “Posts about Travel” is outdated – I went and started another blog just about travel and am currently in the process of combining the two and migrating this entire blog to wordpress – so if you like travel, stay tuned. There is a LOT coming up.

Lastly, “Funny Posts on Moxie’s (and Micah’s) Conversations” is a lot of links to past comic posts or posts where Moxie “talks”. They are ridiculous and silly and sometimes (as in the case of 90% Normal) kind of serious.

Speaking of conversations, here’s a new one.

Thanks for coming over and I look forward to getting to know you.


April is Austism Awareness Month. April is almost over, and I am so, so happy to have Lexi Magnusson guest posting today. Lexi, because her profile picture on Facebook is a kitten with huge, sharp teeth – which I think says a lot about her and her style. She’s a sensitive mama with sharp edges and can snarl. She can also be hilariously irreverent – and sometimes we all just *really* need that, you know? I’ve been grateful to her many a time for making me laugh when all I wanted was dig a hole in the backyard, get in and cry.

Thanks, Lexi.


The Short Bus.

Some confessions. As a teenager, we used to make “he rides the shortbus” jokes. When Carter was just one he’d put bowls on his head and run SMACK into the wall. I called him “shortbus” for a time. I thought I was hilarious.Wrong. So wrong.

Yesterday as I sat in traffic I noticed a mother pushing her small, small child out to a special needs (short) bus. The child didn’t want to go, that was clear. The mom got him on the bus, I watched as she struggled to get him buckled and then quickly left. She hugged her arms across her chest, shoulders slumped, and watched as the bus pulled away. I wanted to leave my car where it sat and run to her. Throw my arms around her and cry and cry and cry. I’m not much of a hugger or a cryer, but this scene took me back to one of the very hardest parts of my life.

That same scene played out in my culdesac when Casey was three. I’d carry him kicking and screaming to the bus. Struggle to get him into his harness and locked in so he couldn’t get out. I’d calmly leave the bus. I’d stand and wave to Casey as he cried and pounded on the window. I’d hold my arms around myself as if they were the only thing that was keeping me from falling to pieces. The first time was the very hardest. I wanted to just drive him to and from school everyday, but I knew that then the fit would be at the school. The scene would be at the school. I wasn’t saving anything by not putting him on the bus. This way, he could be on his way to getting over leaving the house, leaving me, by the time he got to school. I put him on the bus and held it together long enough to watch the bus drive away. I ran into my husband’s arms and didn’t so much cry as WAIL. It made things so real. So solid. So permanent. He walked me in and held me on the couch until I had calmed down to the point where I was only ugly crying a little. Too worn out to put more energy into expressing the pain that had a firm grip on my insides.

The image of Casey crying and pounding on the window is one that will haunt my dreams for the rest of my life. My non-verbal three year old was communicating to me. “Get me out of here!” and I couldn’t. I couldn’t just grab him and stop him from being so sad.

It went on for months. After the first day, I was, for the most part, on my own. Lance had to be at work. I did everything I could think of. Everything that the therapists and teachers said to that would help. We made “social stories,” I got him a toy school bus (they don’t come in short versions), we would prepare all morning. But each day the scene would be the same. Get him on the bus. Tie him down. Say goodbye and watch the bus drive away while just barely holding it together. After the first week of sufficiently scaring the hell out of my other two children, I’d only let myself cry between the time the bus drove off and the front door. I had to pull it together. I had to be tough for the two little boys in the house (who really didn’t give a damn, to be quite honest. They were too little to understand. But I was still stuck in thinking I had to fit into some mfing SN parent mold).

About three months into it was the first time he got on the bus without crying. It took bubbles and the world’s best bus driver. Every morning we would go out and blow bubbles until the bus came. Then the bus driver would throw open the doors and clap and yell, “YAY! Casey’s here!”There are no small jobs when it comes to working with Special Needs kids.

Yesterday the CDC released its latest findings on the prevalence of autism. When we did the walk for Casey, the prevalence was reported at 1 in 150. Even that number made me sick. It meant that 1 in 150 kids were struggling like Casey. It meant that those mothers had to deal with the pain that I had gone through. It means those kids getting on short buses while their parents struggle to hold it together. While they struggle to hold EVERYTHING together. To fit into some mold that no parent can manage.

And now the number is 1 in 88. Do you get that? 1 child in every 88 will be diagnosed with autism. 1 boy in every 53 (!) will be diagnosed. These aren’t just numbers. These are kids like Casey. My Casey. And these numbers represent mothers like me.

I didn’t tell anyone how hard everything was then. My mother would call and ask and I’d tell her that “Casey is doing SO well!” I thought that’s what I had to do. I would act like I was super tough. No one saw those tears. In fact, this is the first real time I’ve ever written this out or even spoken about it in length. But it’s WRONG. We need to talk. We need to say that it sucks and that we are sad. We need to be able to grieve, and grief is not too strong a word. Because it’s hard. It still is hard.

Last night I tried to write out Casey’s diagnosis story. I got about an hour into it and couldn’t take it anymore. I went upstairs and laid next to him in his bed. He wrapped both of his arms around me and hugged me tight. I cried for a long time. He was unaware. He was telling me all about the butterflies he wanted me to order and the plants that I needed to order along with them. All the while he was hugging me tight. Like his insides knew that I needed that, whether he was aware of it consciously or not. I wasn’t just crying for me. I was crying for the moms who have or are in the process of getting their child diagnosed right now. The moms who will have to put what Could Have Been aside for their child and face What Is. That’s the hardest part.

And What Is is tough. It’s sad. It’s exhausting. But it’s good, it’s so good, too. Those times where you feel as though your soul cannot take any more pain will make the times that are good SO MUCH better. I promise you that.

After my daughter Abby, who has Down syndrome, turns three there will be two special needs buses stopping at my house in the morning. Two. Casey and Abby are too far apart in age to ever be able to ride the same bus. I’m not sure how I feel about that yet.

But after all of this, I do know that I don’t think it’s funny.

Lexi blogs at Mostly True Stuff
Facebook Page

Lexi pulled together a list of resources:

Support group: http://community.babycenter.com/groups/a6635/children_with_autism_spectrum_disorder

Blog Directory: http://autismblogsdirectory.blogspot.com/
The blog directory is HUGE. To see Lexi’s favorites, look who links up over at the Special Needs Ryan Gosling Meme’s.

..and about the Special Needs Ryan Gosling Meme: it’s done every Friday at Adventures in Extreme Parenthood, it’s a great way to “meet” other members of the SN community….not limited to parents of children with autism)) http://www.extremeparenthood.com/search/label/Ryan%20Gosling

New Favorite Autism Facebook page: http://www.facebook.com/autismdiscussionpage, TONS of fantastic information about autism.


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