Confessions of a Former R-Word User

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When I was little, I would tell my mom that when I grew up, I hoped I had a child with special needs. I volunteered at the Special Olympics. I sought out my fellow students with developmental delays. I defended them against bullies. I cried when heartless people were mean to the differently abled.

Yet I also used “retarded” to describe people and situations that were stupid.

I admit it, and it horrifies me.

When I started my first teaching job out of college, my classroom shared a door with the self-contained resource class full of students with IEPs and teacher aides. One day after school, I was having a casual conversation with the terribly handsome special education teacher of that room. We were perched on a couple of the desks, discussing some of the politics of the administration when I said, “I mean, it’s all just so retarded.”

He didn’t condemn me or gasp. He just looked as if someone had smacked him right across the face. I recall nervously laughing and saying, “I should probably stop saying that now that I’m teaching, eh?” To which he kindly and softly replied, “Yes, that would probably be wise.”

Except I didn’t. I just stopped using it in front of him.

Why was I was so wedded to a word? I can’t exactly say. I knew that while I wasn’t being intentionally malicious, it offended some of the people I respected. But was that reason to watch my tongue? Was it just political correctness gone awry? For whatever reason, I persisted in my ignorance for a while longer.

I’d love to tell you there was an epiphany, a clarifying moment of realization where it hit me how wrong-headed and awful my stubborn clinging to such a hateful word really had been. There wasn’t. I cringe when I consider the number of times I said, “That’s so retarded,” or, “Wow, you’re such a retard.” I cringe because I wonder at the number of times my words cut through someone’s heart, or even worse, the number of times my throwing around those words made someone else think it wasn’t that bad or that it was even OK to do so. That nothing was really meant by it.

But I can tell you this: Over time, the more people who gently spoke up, the more hurt faces, the more open and honest conversations, I was able to see just how wrong I was. Adding up the quiet moment a girlfriend told me it hurt her mama’s heart to hear that word, along with some well-placed articles and even the non-judgmental yet direct conversations with trusted friends, all led to a clearer understanding — there was simply no reason to persist in using these hateful words.

Now that I’m older and hopefully a bit wiser, I try to put the same methods into practice. There is no reason for using these words. None. As an English teacher, I can tell you there are far more descriptive and useful adjectives. As someone who knows and loves children with Down syndrome and other cognitive disabilities, I can tell you it’s hurtful and dehumanizing. As a mother, I can tell you I don’t want my children thinking those words are OK. And as a member of what I like to see as a compassionate society, I can tell you that using these words doesn’t help anyone.

So let’s all work together to eradicate their use. Let’s be kind but honest about the truth: there is no place for these words in a loving world that respects human life.

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? 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. Check out our Share Your Story page for more about our submission guidelines.

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To the Loved Ones Who Think I'm Overprotecting My Medically Fragile Child

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I know you don’t understand why we’re working so hard to keep our child safe. I know you shake your head and snicker when we ask you if anyone has a cough, cold or stomachache. Trust me, I know you think I’m being overprotective, and I’ve even heard you call me a “helicopter” parent. Even when you think I can’t hear you or see your looks, I do see it all, and I want you to know there are reasons why we do what we do.

The hardest feedback you ever gave me was, “You are just an overprotective parent who had a child almost die. You just feel guilty he almost died, and you think keeping him home will prevent him from dying. But by doing that, you are doing a disservice to him and harming his development.” I remember those words in their entirety because I wish what was said was actually the truth. However, there really isn’t any guilt in what I do, and there are times I wish it were easy as feeling guilty or simply feeling scared.

Unfortunately, the life we lead isn’t about guilt or fear but rather a very real reality — a cold, virus or stomach virus could kill our son. We know it’s just a cold to you, but to my son, it’s never just a cold.

My son was born without a critical system that helps his immune system fight infection. Yes, his immune system works, but he has no stress steroids in his body to manage the stress the illness puts on his body. We have to give him medications and hope they provide his body what he needs to get through the infection. Sometimes it isn’t enough, and we have to go to the hospital.

When you have a child with medical conditions that threaten their lives, you never know what virus will tip them over the edge. For your child, it may end up being a runny nose. For our son, Von, it could land him on life support. In fact it was a cold, a simple cold, that nearly killed him at 3 months of age.

Now we know any illness can set his body over the edge. He might appear healthy to you, but being “chronically ill” isn’t always visible. For Von, it means he has a system we manage with medication, while other kids have feeding pumps, infusions, dialysis or take shots regularly. No matter the issue they face, their bodies aren’t 100 percent, so as their parents, we have to keep them safe.

That means we miss play dates, and sometimes we may annoy you by asking you to please cover your mouth, wash your hands or stay home if your nose is running. What might not feel like illness to you could kill our children. We don’t mean to make you feel bad by asking you to do these things. We’re simply trying to level the playing field for our children. Does it hurt our hearts that our kids can’t do the same things yours can? You better believe our hearts ache as we think of all the things our kids miss out on, like birthday parties, trips to the zoo, playing outside during allergy season or even having play dates in the winter months filled with illness.

Yes, our kids miss out socially, and you might call them awkward. It’s OK if they’re awkward, as long as they’re alive. When you have to prioritize life over a social life, life is always going to win.

Please know we want to see you, and we want you to see us. So when we decline your invitation, or simply can’t go to the next play date, please know we want to be there but can’t. But please never stop asking us to be there because one of these times, the stars may align and we’ll be able to go. We might hover over our child like a hawk, but we will do our best to be there. Just please don’t ever give up on us.

If it makes you feel better to call us overprotective parents, we will gladly wear that title. We will always choose our child’s life above anything else.

Sincerely,

Parents of medically fragile children

Follow this journey on Von’s Super Hero Facebook page.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? 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. Check out our Share Your Story page for more about our submission guidelines.

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A Police Officer Sent This Note to the Distraught Woman She Pulled Over

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One woman got an unexpected surprise after a police officer pulled her over.

Robin Sutherland, from Somerville, Massachusetts, was pulled over Tuesday morning for going 40 in a 30 mph zone, Fox 25 reported. When talking to the officer, Ashley Catatao, Sutherland mentioned that her 90-year-old mother was to enter hospice care the next day. Catatao let her off with a warning.

Then, later that evening she received a flower delivery.

The note reads:

I’m very sorry to hear about your mother. I hope you find comfort in knowing she lived a long life and will continue to live on in your heart and in your memories. — Officer who pulled you over this morning.

Correction: An earlier version of this piece incorrectly identified Officer Catatao as a man.

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The One Word People Kept Saying After My Daughter’s Diagnosis

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My daughter, Katie, was still so frail at 20 days old. She weighed only 3 pounds, wires lined her face and she slept most of the time. I had my concerns, but I still had so much hope for a normal life. When the neonatologist made his rounds, I said, “Katie is not taking a bottle like the other babies. I’m beginning to worry.” I fully expected him to say, “Don’t worry, your baby is perfectly healthy.” But the words that fell from his mouth shattered my world.

Cindy's daughter as a baby in the hospital

“I think your daughter has a neurological condition. She will likely go home on a feeding tube and oxygen. But you are a smart lady. You will be fine.”

He was so matter-of-fact, as if his words weren’t cutting through me like a knife. I couldn’t speak; I could barely breathe. I was in complete shock. During the following weeks, it was my mission to prove him wrong, as if his words determined the future. I would interrogate every nurse wanting to know his or her opinion. Some agreed with the doctor, others did not, but they all said, “She is going to be fine.” 

Those words again. What did fine mean? Back then it meant playing hide-and-seek, the pitter patter of tiny feet running through my house, Cheerios thrown by the handful to the floor — it meant things would be the way I always imagined they would be. His words destroyed that because I was not fine with oxygen or a feeding tube or whatever else came with the neurological condition he so willingly threw our way.

Cindy and her newborn daughter in the hospital

The unknown nearly drove me crazy. All the genetic testing results were fine. For at least eight months, we lived that “fine” rollercoaster. The words, “She is going to be fine” came at me like bullets from a gun. Everyone said it because they truly didn’t know what else to say. But guess what? Katie is fine, I am fine and my perfect little family is fine.

So to the neonatologist, I would say, “Thank you! Thank you for your honesty and for respecting me enough to tell me I was going to be fine. You didn’t know her prognosis for sure. You could’ve beaten around the bush and ordered more tests or told me to wait and see, but you simply said what had to be said.”

And to the “brand-spanking-new-first-time-mommy” me, I would define the word fine.

Today, fine means loving my daughter for exactly who she is. Fine means bad seizures, tube feedings, IEPs and fear. But it also means success with a new communication device, bright smiles and happy days.

You see, fine is knowing no matter what happens in life, I believe God has us in the palm of His hand. To me, fine means Katie is exactly who God wanted her to be, and I believe she’s a pure and sinless soul who brings people closer to Him.

In this world, our plan is not always the plan I believe God has for us. But I believe His fine is so much better, so much richer… His fine is perfect.

Cindy and her daughter

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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. Check out our Share Your Story page for more about our submission guidelines.

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To the Special Needs Dad I Accosted at the Grocery Store

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Dear Sir,

I’m sorry if I freaked you out.

I didn’t mean to.

I was just watching you and your daughter in line at the grocery store.

I was standing with my husband. You were in front of us… and there were about three people in front of you.

As the line slowly moved, I noticed your daughter. She looked a little big to be sitting in the shopping cart. I noticed she was chewing on the seatbelt (which is totally gross). I noticed she didn’t talk and that you would touch her before gesturing something.

I noticed all those little things because they reminded me of my son, Isaac (who also ate the gross seatbelt).

I whispered in my husband’s ear, “Do you think that little girl can talk?”

“Do you think I should say something?”

“Do you think that dad will think I’m totally weird?”

The pressure. I didn’t want to bother you, but my curiosity was getting the best of me. My husband was tired of me asking him questions he didn’t have answers to, and I’m sure you were wondering why I was staring.

Finally, as you paid and were walking away, my husband said, “Go follow him out to the parking lot. It’s OK.”

And I did.

OK, we didn’t make it all the way to the parking lot.

We stopped by the door, and it took all the courage in my 5-foot tall body to speak up: “Excuse me sir, but… can I ask you a question? Does your daughter talk?”

You looked shocked… and I’m sorry I just blurted it out like that (but… I needed to know).

“No… She doesn’t talk… Why?”

I started rambling about how she reminded me of my son who passed away earlier this year. (I’m sorry I blurted that out, too, but, it was honestly what I was thinking. When I’m nervous, it takes me awhile to get to the point.)

My son, Isaac

I told you my husband and I give away iPads to nonverbal children as a way to communicate.

You told me your daughter actually had one at school and one at home and that you used the same program we used with our Isaac.

You kept apologizing to me for the loss of my son. (I’m sorry again I brought that up because it sucks so bad to think about.)

You kept apologizing for your daughter, who kept trying to hit me while we were talking.

Thank you for letting me talk to you about your daughter, for letting me share my son with you (and for not telling me to my face what a crazy woman I am).

Thank you for sharing your daughter’s diagnosis with me.

Thank you for bringing your daughter with you to the grocery store this weekend; it helps heal pieces of my heart every time I can talk about Isaac or help another nonverbal child. Even though you didn’t really need me or my iPads, it was nice to chat.

With love and gratitude,

Your grocery store stalker,

Kathy

*If you would like to donate to iPads From Isaac, we will be sure to get iPads into the hands of those children who need them.

This post originally appeared on Move Your Mountain.

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28 Things Spoonies Wish Others Would Stop Saying to Them

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In 2003 writer Christine Miserandino published an article on her blog “But You Don’t Look Sick” called “The Spoon Theory.” In the post, she recalled a dinner conversation where she explained to her roommate what living with lupus was like. Miserandino used spoons to measure her energy level and ability to carry out daily tasks. After the article was posted, many individuals with chronic illnesses like lupus began using the term “spoonie” to identify themselves.

Natalie van Scheltinga, who has Hashimoto’s thyroid disease and fibromyalgia, started the Facebook page “Spoonies for Life” in February. It’s become a community for spoonies everywhere to connect and share their stories. “We can find some comfort with each other and know we are not alone,” van Scheltinga told The Mighty.

In addition to lupus and fibromyalgia, chronic illnesses include Lyme disease, rheumatoid arthritis, Crohn’s disease and diabetes, among others. Many chronic illnesses are considered invisible and therefore difficult for others to understand. This, unfortunately, leads to some awkward, uncomfortable, sometimes downright insulting moments.

So, The Mighty teamed up with Spoonies for Life and asked their community what they wish others would stop saying to them with regard to their chronic illness. Here’s what they had to say:

1. “Stop being a hypochondriac.” — Amanda Ward

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2. “If you eat all organic foods and a balanced diet, you won’t need to take medications.” — Caroline Freeze Shank

3. “Get more exercise.” — Betina Jackson

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4. “Oh I know someone who had that, but they’re fine now!” — Nina Leach

5. “Why don’t you want to go out?” — Connie Elliott

6. “You don’t look sick.” — Jessica Lynn Palombo

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7. “Have you tried thinking positively?” — Amorie Spangenberg

8. “You were home all day… so what did you actually do around the house?” — Christie Pollock Taylor

9. “You can’t feel bad all the time. It must be in your head…” — Norma Conti Mcdonald

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10. “I know how you feel.” — Estelle de Mol

11. “Oh, but you’re too young for that.” — Megan Geromichalos

12. “My 4-year-old daughter often says to me, ‘Mommy, I wish you weren’t so tired all the time.’ That kills me.” — Liz Brown Culver

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13. “If you’d just lose weight your problems will go away.” — Paula Cohen

14. “When older people say, ‘Oh, you have achy joints? Wait ’til your my age!’” — Sunny Rene Banks

15. “Just push through it.” — Heather Lauren

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16. “Have you asked your doctor for better pain meds?” — Norada Thomas

17. “There’s always something wrong with you.” — Nichole Mack

18. “From my husband: ‘When do you think you’ll be ready to work again?’ (Never)” — Penny Yale Wood

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19. “Well, you do take a lot of pills!” — Sandra Beutels

20. “You get a disability check? Why? You look fine.” — Renee Thomas

21. “Oh, I hurt too! My (insert body part) is killing me.” — Kris Whitaker

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22. “I’ve just been down with a flu, so I know!” — Silje Liv

23. “I had someone who is supposed to be a friend say, ‘You are stronger than you think.’ This really made me ill. As a spoonie we all know the struggle, fighting day after day for years. We are strong but they will never know our fight. Some days I think I will never survive, when every part of my body hurts.” — Marsha McMahan

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24. “I saw you out of your wheelchair yesterday, so why do you need it today?” — Joy Quinn

25. “You should go off all of your meds and detox.” — Veronica Belback

26. “You don’t look like you’re in pain though.” — Paula Woods

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27. “As someone with epilepsy I hate when people tell me, ‘Oh I understand, my dog has seizures.’ While I love my dogs, I do not like my struggles being compared to that of a dog.” — Keti Theon Kharis

28. “Have you tried (insert treatment they found in a generic internet search)?” — Sarah Leanne

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What would you add to this list? What would you rather others say instead? Let us know in the comment section below.

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