Last week, I spoke in front of more than 150 students at The College of New Jersey for their “Spread the Word to End the Word” week, a national campaign in which people pledge to stop using the word “retarded” in a derogatory manner.

In the hopes of spreading awareness for the campaign, I wanted to share my personal story for The Mighty community that I shared with the students.

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In 1996, I started third grade in a multi-handicapped classroom with kids aged 6 to 14 with different types of learning disabilities. Here, I was introduced to the word “retarded” for the first time. I didn’t know what it meant at the time, but because my classmates and I were separated from everyone else, we were quickly labeled as the “speds,” “the outsiders” and the “retarded classroom.”

It was also then that I learned the word “bullying.” The word “retard” had made a hurtful impact on my life. When I was 4, I was diagnosed with autism. Because of my inability to communicate with people by age 5, I was be evaluated to see if I also had an emotional disorder. I lashed out so much as a kid because I wanted people around me to understand me when the words weren’t there.

When kids started calling me “retarded,” I didn’t have much hope that things would ever get better for me. I battled to get through school and my therapies. All I wanted was to be accepted for who I was.

My classmates were enduring similar experiences, but because I couldn’t communicate, because I couldn’t talk things through, I was still the odd kid out. I was desperately trying to make my first friend in a world that was telling me being different from others was wrong.

I wouldn’t make my first friend until high school when I was in a different school for individuals with special needs. The bullying had stopped, and I was given a chance after years of speech therapy to finally have conversations with my peers. Around then, I actually started using the word “retarded” to try and fit in with the wrong crowds in school. I think one of the biggest challenges about having autism is mind blindness and not being able to understand how others are feeling sometimes. After a year of hurting others and not realizing the damage I was doing, I realized I was doing just what had been done to me. For the first time, I wanted to help students like me.

After several years of focusing on disability-related issues, I decided to become an autism and disability advocate in my first year of college. I saw a need to break the barriers of intolerance separating the students with special needs from everyone else on my campus.

Then in 2009, the “Spread the Word to End the Word” campaign started. It revolutionized and spread awareness for anti-bullying campaigns across the world. When it was first announced, Special Olympics came out with the following statement:

The motivation for the campaign was driven by a united passion to promote the positive contributions people with intellectual disabilities make to communities around the world combined with a simple call to action — a pledge to stop using a word — that also symbolizes positive attitude change and a commitment to make the world a more accepting place for all people.

Six years later, hundreds of thousands of people take the pledge to stop using the r-word in a derogatory fashion every year. What started off as a local campaign has become a national phenomenon helping countless individuals each day.

Dr. Temple Grandin, one of the most well-known disability advocates we have in our community today, says it best today when she tells the world to look at those with disabilities as “different, not less.”

Whether it’s attention deficit disorder, nonverbal autism, Alzheimer’s, a traumatic brain injury, dyslexia, Down syndrome or anything else, each individual in our society has something to offer.

Regardless of the disability, each one of us has amazing abilities that deserve to shine.

Many who are involved with this campaign tell us to stop saying the word “retarded” and replace it with the word “respect.” I would like to go a step further and ask you to also consider the word “reflection.” Look at who you are as a person and how you treat others. Try to define yourself as someone you can be proud of when you look back decades from now.

So at the end of the day, I ask you this:

Be educated, learn the facts, and please define yourself as someone who will try and be understanding of others. Society will be a whole lot better for it.

I’d like to thank TCNJ Best Buddies for having me out to speak to help spread the word about an important cause that affects so many!

This post originally appeared on

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It can be a lonely world when you have multiple children with disabilities — especially when you add a bit of shyness into the mix (OK, a lot of shyness). A few years back, I started to realize the majority of my daily social interactions were with my kids’ teachers, therapists or doctors. A busy schedule of developmental schools, therapies and appointments makes up our weekdays. We may have a few activities during weekends, but for the most part we stay home to rally ourselves for the coming week. Waiting rooms can be a social outlet for me to meet people, but rarely do any longterm friendships arise. I also usually run errands (blissfully kid-free) while the kids are in therapy or school because taking my kids shopping gives me hives (I’m kinda kidding). By the time I get home at the end of my day, I’m ready to collapse and relax.

Another unusual factor is that my husband, Matt, is home most days. He’s a musician and usually performs at night. He and I do a lot together during the day, and this contributes to my lack of social life with other moms. Plus, the majority of my kids don’t socialize with their peers and consequently, they don’t get invited to anything. So forming a relationship with other moms through my kids is generally not an option. My 8-year-old has been invited to more birthday parties than my six other kids combined.

My inner circle of friends rarely extends past my siblings. They’re the ones I text, phone or email the most because I can be myself and not worry about over-sharing the latest drama, catastrophe or frustration. Many of my Facebook “friends” are fellow adoptive families, Down syndrome families or autism families, yet sadly I’ve never met most of them face-to-face because they live in other states.

I’m also painfully aware that the peculiar, sometimes annoying and even gross behaviors which are the norm in my life can be deal-breakers for other adults and kids alike. Watching us chase after runners and wanderers, trying to interact with kids who have little to no social skills or speak unintelligibly, and seeing a 9-year-old who isn’t fully potty-trained is a little daunting. Then there are the nose pickers, hand lickers, screamers and the child who randomly strips down to her undies. I think our family overwhelms some and scares off others.

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Don’t get me wrong — I meet many kind and friendly people. I just don’t seem to follow through with forming a deeper connection or friendship with them. I’ve begun to think my kids’ social deficits are starting to rub off on me. I just don’t seem to have the ability or gumption to get out there and forge new friendships, let alone sustain the old. If my phone rings at night after a long, draining day, I usually cringe and avoid answering. I forget to call people back, rarely enjoy chatting on the phone anymore and hardly ever feel like going out. I’ve become a homebody. A recluse. I’ve become my dad. Crap.

Someone suggested the other day that I “go on dates” with other moms to explore and accelerate potential friendships. She also advised I tone down talking about my kids initially. I had to laugh because I do tend to talk about them at great length. Think diarrhea of the mouth — once I get going, it’s hard to stop. It’s not always a good thing to start a new friendship with a dissertation about my seven kids and all their issues. My new friend’s eyes usually start to cross as they begin formulating an escape plan. I’ve thought about the date suggestion and have decided it’s a great idea. Now I just have to lose some of my inhibitions and brazenly ask out another mom. Eek!

I was also thinking about how great it would be to have a website for posting personal ads or profiles for finding new friends in the area who live with similar disabilities. Here’s my tentative first attempt:

Mom of seven looking for new girlfriends. Must like autism, Down syndrome, big families, quirky kids, chaos, movies and going out to eat at restaurants with signs that don’t involve golden arches. If future friend has a child who doesn’t mind parallel play to the extreme and little to no talking from a playmate, that would be a huge bonus.

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This post originally appeared on Our Version of Normal.

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Dear Multiple Sclerosis,

You, my frenemy, suck. You’re a selfish, sneaky, hag that seemed to creep in in the middle of the night and steal so many things I hadn’t even realized yet were dear to me. You’re like the Grinch pilfering children’s Christmas gifts. You plucked my dreams and goals, tossing them away while you made your escape. For a period of time, this crushed me. My soul, my confidence and my drive had all been shattered. I was lost, scared and completely unsure of what to do to get myself back to “good.”

You had an arch enemy though, and he had within himself your kryptonite. My beautiful little boy, his unshakeable spirit, the hope that shone through his innocence began to combat your negativity. When I would wake to his smile and hugs, I knew without question, I was stronger than you. And he, well, without even knowing it, he was stronger than me. As my gait got better, my fine and gross motor skills came back more easily, and my word recall did too. You no longer had a firm grip on me.

I call you my frenemy because, in hindsight, there are lessons I wouldn’t have learned without you entering my life. I mean, shit, I’d like to think there were better ways to learn these things, but if you were the only teaching candidate, then thanks for taking the job.

Some people age without ever learning what’s truly important in life. Some die before they have the chance to be truly happy. You prevented me from meeting that fate. You opened my eyes to certain truth:.

1. Being efficient and particular are great qualities at work. But don’t bring those things home with you; your children and your family deserve the ability to not fit a mold, to not have their own creative breath stifled.

2. Structure is good; it has so many positive effects on us. But winging it and breaking the barriers is where the best memories are formed. Having breakfast for dinner, running outside in your pajamas to dance in the rain with your kids, sleeping in a living room fort for three consecutive nights — these are the things you and they will remember when they reflect on your time together.

3. Talking is amazing; communication is key in the health of any relationship. Listening is the cement that seals the cracks of your foundation when it begins to break. Open your ears and close your mouth.

4. Ask questions, use your imagination. Let your children lead you. Play! Too often we “need to” do dishes, laundry, sweeping first. Unless it’s putting out a fire, it doesn’t need to be done first. Your kids need you first. Always.

5. Tell your kids how much you love them. Stop moving, sit down with them, read, cuddle, kiss their forehead. And then tell them what they mean to you. Take no moment for granted; it truly may not come again.

6. Pray. Pray to whoever. If it makes you feel better, pray and give thanks. It forces you to find the beauty, to acknowledge the good and set aside the bad, even momentarily.

7. Count your blessings, not because you’re luckier than myself or that guy in a wheelchair, that woman missing her arms, those people with cognitive impairments (you’re not) but because all of those blessings are privileges not rights. They’re not guaranteed; they could be taken at any moment.

8. Spend a little time acting like a hippie on acid having a really great trip (just don’t actually do the acid). Meaning, enjoy your senses, the feelings you have when you touch someone’s cheek, kiss your partner, hug a family member, hold your child close and smell their sweet little head. Commit these things to memory. When you need them, they will carry you so much further than you ever could imagine.

9. Smile. Be accepting. Don’t judge. Don’t put up with anything that makes you uncomfortable or causes negative feelings. Recognize those who are meant to be permanent in your life and those who aren’t; be grateful for them regardless. Express your feelings. Let no one walk away not knowing you love them. Advocate. Hug people even when it makes you uncomfortable… especially when it makes you uncomfortable. Stop being greedy, realize how good you have it. Find ways to bring yourself peace; you’re the only one who can do this, no one else can, and no one can fault you for living peacefully.

10. Love. Love with your whole heart.

MS, you’ve taken, but in the absence of the things you stole, more important and even better things were able to shine through. New dreams and goals, a happier existence were all born. So my frenemy, I might hate your guts for showing your rather ugly head, but thank you. For everything.


The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Bill and I were the best of friends throughout college. We met at a time in my life where I was trying to find out who I was and how I was going to survive in a world where I would face extreme prejudice, given my visual disability.

October of my freshman year, I joined a community service project, where I met Bill — a slightly older gentleman who used a set of purple crutches as a second set of feet. I was to be his mentor, so the program said, but the roles were actually reversed.

“Hi, my name is Billy, and I am a self advocate,” he said with great pride. “I have my own apartment and work at a movie theater.”


He went on and on about his accomplishments in detail — stuff the typical world would take for granted. He also mentioned these advocacy conferences he goes to and wanted me to join him for one. Although the deadline for me to join that year was past, I told him I’d give it a shot the next time one came around.

The year passed, and we became close friends, hitting up Starbucks every now and again for a latte before going to the movies where he worked. We spoke about many things, from my life at the college and his life trying to make friends and be successful. I told him how ashamed I was of being disabled and his reassuring tone told me, “Everything will fall into place if you reach for the stars.”

It kept me from giving up on myself in my times of doubt.

When October came, Bill passed me an empty shoebox from the closet and told me to fill it up with things that meant something to me so I had it for the conference. I thought it was a display piece and managed to dig up some objects for the box. These included my college hoodie, my hospital ID from my work study, my sketch book, some Disney stickers my parents sent in a care package and some other things.

I got to the conference center the next day. I asked random hotel staff where this box display thing was, and nobody would tell me. Nobody knew a thing.

That was when Bill came wheeling from behind and told me, “Not yet.” He had me place the box in his tote bag.

“But your bag is empty,” I said, thinking he was going to make a box with me.

“Oh, I did mine years ago. Let’s grab some coffee and head to the room. It’s about to start.”

So I entered the room full of about 100 or so people with varying disabilities. None of them, with the exception of a few from the group, had a shoebox.

Then it dawned on me.

“Oh, hell no! He seriously didn’t do this to me,” I thought. I would be one of the people presenting.

The shoebox, low and behold, was an “about me” box, a tool that made it easier to explain your story to others. Like a show and tell, but in this case, it emphasized more on the telling.

I gave Bill a look, and he mouthed at me, “Just trust me.”

I let some others ahead of me so I could get the feel of what needed to be done. One gentleman, who happened to have Down syndrome, showed off his McDonald’s employee hat with the reward pins on it. He also had some Special Olympics medals. Another girl had autism and showed off some things she loved, including her Hannah Montana CD. They showed off everything with pride, which was something I lacked.

When it was my turn, Billy gave me a nudge and sent me on my way with my box in hand.

“Hello,” I said, as my voice echoed back to me from the microphone. Just as I was about to step back and shake my head to say “No,” Bill chimed in with “You go, princess!”

And so I began.

“My name is Amanda. As you can hear, my best friend put me up to this. “

The crowd laughed.

“I am here to show you what’s in my box, the things I am proud of. I am a college student in my sophomore year studying advertising communications with a minor in psychology. I also work at the children’s hospital where I help kids keep their mind off their illnesses by playing with them and doing art projects. I love art, and I draw a lot when I’m not busy at work. I have a dream of working for Disney some day, and I plan to do this despite my disability. I’m legally blind, and it’s hard for me to see things. It’s hard for me to admit it. I play my disability off as if it’s nothing. I never felt comfortable telling my story… until now.”

I showed off the remainder of my box and wrapped up my speech. And as I did, I saw a few stand as they cheered, with Bill rolling up to me to give me a hug afterwards. “I knew you could do it, Mandy!” he said.

The year I was set to graduate was the year I nominated Bill for a leadership award, a high honor given every year at the conference to someone who helps others stand up for themselves. It was my way of saying “Thank you,” as I was set off to explore the world on my own. He got it.


It’s been about seven years since he won the award, and throughout everything that’s played on in my life since then — from crappy relationships to the constant job hopping and finding my niche in this world — I look back at that day with the shoebox in hand, the day I learned everything was going to be all right, the day I became a self-advocate.

I want to give special thanks to Bill and the wonderful people at Advocates in Action Rhode Island for all you have done to help me become the person I am today. It’s a great organization with a lot of heart.

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Dear PTSD, OCD and Depression:

I’ve known you all for a long time, even when I didn’t understand you.

I knew you were there for me, just not in the way a friend would have been.

I learned to ignore all three of you with the help of alcohol.

For many years I thought I was just drinking to have fun. In reality I was drinking to forget and cope with the evil roots you’d planted in me.

Post traumatic stress disorder (PTSD), you were a tough one to learn to face. Since I was a kid, I let you get into my head and dictate my life. I had many sleepless nights because of you, and I learned to surrender to your thoughts. In a way, you made me feel like I didn’t deserve to live.

Obsessive compulsive disorder (OCD), I know I used to make fun of the fact that I couldn’t function without you, and in a way, that’s how it was. But you also allowed me to have some control of the things PSTD wouldn’t allow me to control. So I don’t really dislike you all that much. I just wish you hadn’t been so persistent.

Depression, you were always there, almost dormant. You invited yourself to be a part of my life a few years after I’d stopped drinking. You brought so much pain; I almost let you take my life to void those feelings.

Despite the suffering and the pain you three imposed on me, I don’t regret having you in my life. I know I’m a better person because of what you put me through.

Because of you, I found myself, and with some good people’s help, I was shown how strong I am.

You’ve taught me to be compassionate and how to find a purpose and look at life with optimism.

I’m thankful I didn’t surrender to your perseverance and desire to fully control me.

You’ll always be a part of my past, present and future. But now you’re just a reminder of the struggles and triumphs. I’m happy to tell you that I feel victorious and ready to help others overcome you. This is all because of your lessons.

Thank you for giving me a reason to be happy and be grateful.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Some of the better moments of my parenting life have boiled down to this. Someone took ten seconds out of their lives to help us out. To accommodate us. To include my kiddo.

A simple gesture like the teenager who broke from her gaggle of friends to hold open the door for me when I was carrying/dragging my melting-down kiddo from the mall. She probably went right back to her friends and her life, but it made all the difference to me. Two years later, I’m still thinking about her.

“Hang on. Let me see what I can do.” I’ve heard this statement a lot when advocating for my kiddo. Sometimes they come back and they can do something. Sometimes not. Either way, they’re trying. I appreciate the effort regardless of the outcome. They’re taking ten seconds out of their day for me.

Imagine what you could do with ten seconds for someone else. It’s so easy in this autism life to dwell in all the times we’ve been shunned, scorned and screwed over. What would happen if we all shifted that attitude over to ten seconds of kindness? Not just helping each other out but everyone.

What if ten seconds of kindness meant accepting when something couldn’t be done for us the way we asked? What if we took that angry energy and channeled it into looking for a compromise?

What if we just accepted that people ask for help in different ways because their needs are different? What if we didn’t shun what they saw as solutions simply because it wouldn’t work for us?

What if we all just took ten seconds to take some deep breaths and chill the hell out a bit?

This post originally appeared on Autism With a Side of Fries.

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