Amy Van Duyn

@amyvanduyn | contributor
I want to change the world through kindness and self esteem. As a published children's book author, my stories reflect many of these themes. I want to empower children to love themselves. I joined The Mighty for support and education so that I can help my autistic son. Now I wish to contribute with what I've learned through this experience as well as other experiences I've had in life.
Community Voices

Are there Medullary Sponge Kidney specialists?

I was diagnosed with MSK a few years ago. My flare-ups are increasing in their frequency and duration. My urologist and nephrologist are passing me back and forth, seemingly not knowing what to do about it. I understand this is a rare disease, but how does everyone else manage this? Are there specialists just for this disease? How do I find them?

#MedullarySpongeKidney

1 person is talking about this
Community Voices

The Great Debate- To ER or not to ER

I’ve been having right side flank pain since Saturday morning. Haven’t been able to get an appointment with my primary or nephrologist, both said “go to ER if pain persists”. I’m so hesitant to go to the ER because it’s always such a huge waste of time. This last year I’ve been to the ER about a dozen times, and each time the doctors either don’t know how to treat me, or don’t believe me. I’m treated like a pill chaser, and told my pain “shouldn’t be” because either the stones are non obstructing or too small to “cause pain”. I’ve always had a relatively high pain tolerance- so the pain scale is tough for me. My “10” is someone else’s 15 or 20.

This morning my right side flank pain is up to an 8 for me. I’ve felt worse, but this is still pretty strong and starting to take my breath away. For an average person that doesn’t have a chronic illness, you would not hesitate to seek medical treatment. For me, I’m hesitant to even try. 😔

This is my life now. This is medullary sponge kidney. #MedullarySpongeKidney #RareDiseases #SpoonieProblems

6 people are talking about this
Community Voices

Autism Myth: What's Your 'Special' Talent?

<p>Autism Myth: What's Your 'Special' Talent?</p>
37 people are talking about this
Community Voices

Let’s forget about the numbers and focus on what you can do

Charlie,

Today was one of those days. We got the results back from your PPCD speech assessment. They evaluated your ability to communicate. If your delays in speech and communication were significant enough, you’d be eligible to attend the special-needs classroom. I knew without a shadow of a doubt that you would qualify. Still it hit me kinda hard when the speech therapist called back with the results. You scored in the 1st and 2nd percentiles for the two speech and communication tests. The bottom of the scale. “The gap is quite severe”, she said.

You know what Charlie? Those tests are stupid. Albert Einstein said, “If you judge a fish by its inability to climb a tree, it will live its whole life believing it is stupid”.

I wish they would have evaluated your amazing ability to sort objects by size and color! I wish they’d evaluate your creativity when playing with blocks and the shapes you make. I wish they would evaluate your ability to make high towers and be so delicate when doing so. I wish they would evaluate your great taste in music.

Your inability to communicate and speak doesn’t define you. Autism doesn’t define you. You are unique, and you can do so much more than they saw at first glance. Let’s just forget about the numbers and focus on what you can do. I have a feeling that one day you will show them – one day you will tell them what you can really do.

I love you,

Mom

2 people are talking about this
Katelyn Decker

How I Feel About the Response to Kodi Lee as an Autistic Viewer

If you haven’t heard Kodi Lee’s audition on “America’s Got Talent,” according to the Internet, you’d be considered “living under a rock.” Celebrities from Terry Crews to Oprah Winfrey have retweeted the AGT video, which has been viewed online over 46 million times. Thousands of people on social media have shared this video, commenting on how emotional it made them feel and how “inspired” they are by Kodi Lee’s performance. Why is his talent any different from most people who go on the show? Kodi Lee is blind and autistic, and even though the judges seemed apprehensive the moment he walked on stage with his mother guiding his steps, those thoughts appeared long gone once he sat behind the piano and performed Donny Hathaway’s “A Song for You.” Each judge appeared to be moved in different ways, from sitting back stunned to wiping away tears. After his performance and a standing ovation, one of the judges, Gabrielle Union, pressed the golden buzzer and sent Lee further into the competition. Great story, right? Needed a few tissues after watching his performance? I did too. My issue is not with his performance. His talent is incredible and anyone, regardless of musical experience, could see that. The issue is the way many people, not just the ones in the audience, responded afterward. As an autism activist, every time someone who is autistic goes viral on social media, I learn as much about the situation as I can and glean as many opinions as I can from people from all walks of life. In this situation, I have seen comments like “Kodi Lee Defeats Autism,” “Autism and blindness can’t erase the smile from the face of Kodi Lee,” “Erase the DIS, highlight the ABILITY” and “His only language is MUSIC.” These kinds of comments are turning Lee’s amazing talent into “inspiration porn” — feel-good stories for non-disabled people. Being autistic myself, it always rubs me the wrong way when the media turns a disabled person’s struggle to survive and use their talents to get through life into inspiration for non-disabled people to “see the world in a new way.” Lee’s own mother said music saved him when he was younger. And that’s great! Good for him to find an outlet when he struggles to fit into a world that’s not made for people like us. But turning his talent and his life into a cry to “erase the dis and highlight the ability” and to push the ideals that “autism can be defeated” and that “autism and blindness take away from true happiness” is disturbing. Disability is not a bad word. Making it a bad word hurts disabled people. Autism is not something to be defeated, it is who we are. It is how our brains function. Describing autism as a “battle” further perpetuates the cure narrative, which is harmful. Autistic people and blind people smile. I don’t know why on earth some people assume disabled people are not happy because of their disability. Most disabled people I know are happy despite their circumstances. They choose to accept who they are, so why shouldn’t the rest of the world? Why isn’t the world more wheelchair accessible? Why aren’t people more accepting of those who have intellectual or physical disabilities? Why do they often either shun them or put them on pedestals as inspiration? Disabled people are talented. Autistic people are talented. Why is this still coming as a surprise to the general public? Why are disabled people still treated as “inspirations” when their talents are included in something like this? Is Kodi Lee an incredible artist? Yes! But instead of his autism and blindness being the forefront of the news stories about him, why aren’t they talking more about the amazing talents he has? Instead of trying to take apart the term “disabled,” why don’t they focus on including more disabled people in music so it doesn’t come as a surprise when an autistic person or a blind person has an amazing gift? So many of us have incredible talents that can be shared with the world, but inspiration porn picks apart these stories and creates us into commodities to “feel good,” not humans with gifts that can change the world. We can change the world. But you have to listen to us first.

Community Voices

Unexpected Kindness

Is it timing? Is it coincidence?
Planets aligning or Divine Providence?
For the undeserving to find such favour?
To find preserving from an unexpected Saviour?
For hunger to be subsided and honour be savin’?
For steps to be guided to provide safe haven?
It must be more than something just random,
as blessing does fall, like someone has planned them.

I know what happens next in the story,
but in the present, the unknown hides the glory.
We see what’s been done before, in heart can be done again
and it’s these old-school rhymes that on which I depend,
‘cos right now, my life seems really outta left-field.
A barren season of sorts, with limited harvest yield.
The sun’s shining down, ground water is seeping
through the ground that’s been ploughed. I feel ready for reaping.

The months tick over, and the seasons change.
Lord of the Harvest, please arrange
my coming and going, and what I need to do next
‘cos I really want You, and what is the best.

© Mark Bryant 27 May 2019
#MightyPoets
#MentalHealth
#Depression
#Anxiety
#unemployment
#overcome
#oldschoolrhymes

Ruth 2
Ruth gathers in Boaz’ field.

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Community Voices

You Don't Have To #MightyPoets

You Don’t Have To…

By Amy Van Duyn

You don’t have to
Believe what they say
You are who you are
And that is OK
 
You don’t have to
Do what they do
If what they’re doing
Doesn’t seem right to you
 
You don’t have to
Agree when they’re being unkind
You can think for yourself 
And you have your own mind
 
You don’t have to
Be all the same size
Don’t listen to nonsense
Don’t listen to lies
 
You don’t have to
Look all the same
Don’t play along
With that silly game
 
You don’t have to
Be all the same color
Each person you meet
Is a sister or brother
 
You don’t have to
Be like everyone else
You’re awesome and special
Just being yourself
 
You don’t have to
Feel what they say you should feel
It’s what you think 
Of yourself that is real
 
You don’t have to
Hit to prove that you’re strong
You know in your heart
That violence is wrong
 
You don’t have to
Hurt someone else
To help you feel better
About your own self
 
You don’t have to
Make fear and hate spread
Share love and kindness
With others instead
 
We don’t have to
Stop being friends
When we are all enemies
That’s how our world ends
 
We don’t have to 
Allow that to be
Changing the world
Starts with you and me
 
#Selfesteem #Selflove

Amy Van Duyn

The Top 10 Most Offensive Stereotypes I Hear as a Plus-Sized Woman

It’s hard enough dealing with issues of image when you’re a woman. Everywhere you look there are air-brushed models, unrealistic representations, and judgment. As I’ve grown, I’ve realized the falsehood of these things and have moved on from comparing myself to models and actors. As a plus-sized woman, however, I’m frequently annoyed with stereotypes and assumptions about us. It’s time us big girls spoke up and were heard. I recently was disappointed when a well-known writers’ conference had the whistle blown on them (justifiably so) for deciding not to bring a staff member back for this year’s event because of her size. This happens every day, and it has happened to me. There are many different reasons someone could be overweight, which is why the stereotypes are so aggravating. But I think it’s safe to say that generalizing any group of people is ignorant and wrong and dangerous. Overweight women (and men) are no exception. Below are the top 10 most offensive stereotypes I’ve experienced and what I think people should know about them. 1. We’re always eating. Think of the TV sitcom where the token fat person is always shoving their face and has no self-control. This is partially a lazy way of writing for a cheap laugh. But it’s a common stereotype, and it’s annoying. And is it really all that funny? Hasn’t this joke been run into the ground enough already? 2. We’re all lazy. We’re also not all lazy or inactive people. I’m busy from the minute my feet hit the floor in the morning until my head hits the pillow at night. I know of many other overweight people who are the same way. Just because we’re not hanging out at the gym like it’s a hobby doesn’t mean we’re sitting on our butts eating candy all day. 3. We’re all sick as a result of our weight. We’re not all wracked with health problems, either. I realize being overweight can increase the risk of a multitude of diseases and issues (heart disease, diabetes, etc.). But it’s not a guarantee, and you can’t assume an overweight person has these challenges. I remember when I first became pregnant with my son. I was 37 years old and overweight. Don’t think I didn’t notice the up-and-down eyeball assessments I was getting. I wanted to tell them, “Yes! I’m aware I’m fat and you think I’m as old as Methuselah to be giving birth, but I’m not irresponsible, and I will take good care of myself and my child!” I’m not giving advice on this in any way, shape or form. See your doctor for that. But yes, I had a healthy pregnancy and child. I ate healthy and had great prenatal care. But I could have done without all the judgment. 4. We’re jealous of thin people. Not long ago, someone at work (who happens to be thin) made a big point in speaking to me to go on and on about how fat she thinks she’s getting. It’s clear I’m much heavier than she is, and she was speaking only to me at the time. This isn’t the first time I’ve had this type of thing said to me. When someone who is obviously quite thin says this to someone who is obviously heavier, the first thing that comes to mind is they want you to say, “Oh, I wish I was as thin as you are! You aren’t fat at all!” It’s a fish for a compliment. Here’s the thing: I don’t care about who is thinner than I am. I’m not comparing myself to them! We are not all jealous of thin people. 5. We all have low self-esteem and feel awful about ourselves. We don’t all have low self-esteem, and we’re not all depressed. In fact, even though I’m currently almost at my highest weight (and I’m aging), I feel better about myself than I ever have. I realize what people find attractive can vary dramatically. The only person I truly care about being attracted to me is my husband, and he’s not complaining. I once had a wellness coordinator where I work tell me “you’re worth it” as if she assumed just because I was fat, I didn’t think I did deserve to pursue whatever I felt was good for me. 6. We don’t know we’re fat. I’ve had more than one person in my life feel the need to point out to me that I’m fat. We don’t need for people to make us aware of being overweight. We’re perfectly capable of knowing this on our own, and believe me – we know it. 7. We don’t know how to lose weight ourselves. We don’t need to be enlightened with unsolicited advice as if we aren’t aware you need to burn more calories than you consume to lose weight. We aren’t all completely helpless in this capacity, and for many of us, if want to lose weight bad enough, we’ll do it! We aren’t all completely ignorant on how to lose weight. Sure, there are educated professionals who are skillful and experienced in helping people reach their goals. Nutritionists, personal trainers, coaches, etc. I’m not at all saying they’re not important or valuable. What I mean is, we don’t need the “stink eye” if we happen to indulge in seconds or have a dessert. I once had a co-worker show me her sandwich, which had plenty of vegetables on it, and say, “Oh, look at that. Doesn’t that look nice, colorful and delicious with all of those vegetables?” She said this to me as if I was a child. I am sure of her patronizing agenda because of other things she’d said to me in the past. 8. We’re all jolly slobs. Is it really that funny for so many silly, bumbling TV, book and movie characters to be chubby? Do they so often need to be represented as simple-minded, adorable goofballs? We aren’t all uneducated yet loveable fools. Think of the chunky kid in the kid’s adventure movie who always needs to be rescued or the portly cartoon mouse always lagging behind…you get the picture. Some of us are educated, successful professionals. We’re goal-oriented and have a lot to offer an organization with our well-developed careers. 9. If we’re overweight, we must be unhygienic. We also are no less likely to look or dress professionally to present ourselves well. I once had a family member tell me about someone they thought seemed unhygienic (and happened to be overweight) by saying, “Well, I know fat smells…” My eyes about rolled out of my head. I’ve been around too many stinky skinny people for this to be an absolute! We know this is a common stereotype or we wouldn’t see the slob character in a TV show or movie portrayed as fat. You’ve seen it: stains on their shirt, wrinkled clothes, general unkempt appearance. This shouldn’t even have to be said, but not every overweight person is unhygienic (for crying out loud…) 10. That it’s anyone else’s business or that discrimination should be tolerated. What I want to say to these creators of the stereotypes is this: if it doesn’t affect you, don’t judge. It’s not really anyone else’s business what someone weighs or what size they wear. It’s not OK to transfer low self-esteem toward a fat person to make you feel better about yourself. Stereotypes and assumptions are destructive. This is where discrimination is born. This is how we are passed over for promotions and opportunity. It’s not OK to discriminate against someone for any reason, and size is not an exception. It’s out there. The challenge is real. It’s time we spoke out.

Amy Van Duyn

'What's That on Your Leg?' Life With Dermal Hemangiomas

Dermal hemangiomas are caused by a buildup in the blood vessels under the skin, causing them to raise through the surface.  They’re more commonly referred to as “strawberry marks” due to their appearance.  This makes it sound charming, but for someone that has them as badly as I do, they’re anything but. These are just my own experiences with the condition. If you suspect that you or your child has this condition, you should speak to your doctor to be sure the hemangiomas are benign.  Dermal hemangiomas can also sometimes be located under the skin and go further down into the body, which can also cause problems. My doctor told me dermal hemangiomas are most likely genetic but that otherwise there’s no real known cause. They’re most common in infants and small children, but mine developed later into my adulthood. Not only did mine appear as an adult, but they worsened with age. I’ve been fortunate to not have many on my face, but I’ve had a few. A few small ones have taken up residence on my back, upper arms and shoulders. There are some small red dots over my upper thighs, but the largest ones I have very obviously appear on the inside of the lower part of my left leg. There’s a constellation of red dots there ranging in size from that of a pea to a small marble. There are about nine of them, and they’re noticeable. This keeps me from wearing shorts, capris or skirts unless they go down to my ankles. The few times I felt brave enough to try, exposing my legs, I experienced obvious stares as well as outright questioning, “What’s that on your leg?” I don’t think the people who ask this realize this is a permanent condition. Maybe they think I just cut myself shaving (which, by the way, is a considerable challenge) and that I’m unaware. Or maybe they’re just genuinely concerned because they think I’ve injured myself.  But it is embarrassing, and it makes me self-conscious. Plus, I just don’t have the time to stop and educate everyone about the condition. I’m afraid my annoyance is going to come across as rude. I’ve resigned myself to covering them, but I’m limited to what I can wear because of their location. In the winter I rely on boots to be able to wear shorter skirts. In the summer, the maxi skirt is my best friend. Once during a pedicure, the individual performing the service hesitated when she saw the red dot cluster on my lower leg. I explained what they were (for about the thousandth time in my life) and that it didn’t hurt to touch them and that they weren’t contagious. I wanted her to feel comfortable continuing with the service. Plus, I wanted the full lower leg massage! Her response was “Well, I’ll just avoid it” an that, she did! I paid full-price for a pedicure with half the massage — and that’s the best part! I once visited a dermatologist about having my hemangiomas removed. They informed me they have a specialist with a laser who comes in for scheduled 10-minute intervals and could remove them. The price was $200 per 10-minute session, but they told me it just took a few seconds per hemangioma. I was optimistic they could remove at least the cluster on my lower left leg. This was early spring, and I had dreams of sporting some cute capris or sun dresses that coming season. I left disappointed. A few of the very tiny ones came off, but they told me (after the fact) that the larger ones would take several treatments, if they came off at all.  That was $200 I could have spent on maxi dresses and boots to hide them! I was left with the leg cluster. Sometimes, the ones on my leg hurt. But I realize how fortunate I am that, for me, this condition is benign (which they typically are) and has caused no real health problems. I’m very thankful mine are no worse than they are. It does affect my day-to-day life, however. I’m forced with the decision to either wear what I want and deal with the stares and questions or to go out of my way to dress to cover them.  It’s more than a nuisance; it’s a lifestyle.

Amy Van Duyn

'What's That on Your Leg?' Life With Dermal Hemangiomas

Dermal hemangiomas are caused by a buildup in the blood vessels under the skin, causing them to raise through the surface.  They’re more commonly referred to as “strawberry marks” due to their appearance.  This makes it sound charming, but for someone that has them as badly as I do, they’re anything but. These are just my own experiences with the condition. If you suspect that you or your child has this condition, you should speak to your doctor to be sure the hemangiomas are benign.  Dermal hemangiomas can also sometimes be located under the skin and go further down into the body, which can also cause problems. My doctor told me dermal hemangiomas are most likely genetic but that otherwise there’s no real known cause. They’re most common in infants and small children, but mine developed later into my adulthood. Not only did mine appear as an adult, but they worsened with age. I’ve been fortunate to not have many on my face, but I’ve had a few. A few small ones have taken up residence on my back, upper arms and shoulders. There are some small red dots over my upper thighs, but the largest ones I have very obviously appear on the inside of the lower part of my left leg. There’s a constellation of red dots there ranging in size from that of a pea to a small marble. There are about nine of them, and they’re noticeable. This keeps me from wearing shorts, capris or skirts unless they go down to my ankles. The few times I felt brave enough to try, exposing my legs, I experienced obvious stares as well as outright questioning, “What’s that on your leg?” I don’t think the people who ask this realize this is a permanent condition. Maybe they think I just cut myself shaving (which, by the way, is a considerable challenge) and that I’m unaware. Or maybe they’re just genuinely concerned because they think I’ve injured myself.  But it is embarrassing, and it makes me self-conscious. Plus, I just don’t have the time to stop and educate everyone about the condition. I’m afraid my annoyance is going to come across as rude. I’ve resigned myself to covering them, but I’m limited to what I can wear because of their location. In the winter I rely on boots to be able to wear shorter skirts. In the summer, the maxi skirt is my best friend. Once during a pedicure, the individual performing the service hesitated when she saw the red dot cluster on my lower leg. I explained what they were (for about the thousandth time in my life) and that it didn’t hurt to touch them and that they weren’t contagious. I wanted her to feel comfortable continuing with the service. Plus, I wanted the full lower leg massage! Her response was “Well, I’ll just avoid it” an that, she did! I paid full-price for a pedicure with half the massage — and that’s the best part! I once visited a dermatologist about having my hemangiomas removed. They informed me they have a specialist with a laser who comes in for scheduled 10-minute intervals and could remove them. The price was $200 per 10-minute session, but they told me it just took a few seconds per hemangioma. I was optimistic they could remove at least the cluster on my lower left leg. This was early spring, and I had dreams of sporting some cute capris or sun dresses that coming season. I left disappointed. A few of the very tiny ones came off, but they told me (after the fact) that the larger ones would take several treatments, if they came off at all.  That was $200 I could have spent on maxi dresses and boots to hide them! I was left with the leg cluster. Sometimes, the ones on my leg hurt. But I realize how fortunate I am that, for me, this condition is benign (which they typically are) and has caused no real health problems. I’m very thankful mine are no worse than they are. It does affect my day-to-day life, however. I’m forced with the decision to either wear what I want and deal with the stares and questions or to go out of my way to dress to cover them.  It’s more than a nuisance; it’s a lifestyle.