What’s One Thing You Wish People Knew About Down Syndrome?

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What’s one thing you wish people knew about Down syndrome?

We asked our Mighty community this question, and they came through with powerful insights. Watch their awesome responses in the video above or read their answers below. You may learn a thing or two — we sure did.

Katie Driscoll and Grace Driscoll:

We want people to know that individuals living with Down syndrome have the same hopes, dreams and aspirations for independence and employment that everyone else has.

Jamie Brewer, actress:

We can do everything you can do. We are active, social and creative. Just like you.

The Stafford family:

My sister rocks her extra chromosome.

Jillian Benfield:

Down syndrome has a way of changing both people and families for the better.

David DeSanctis, star of the upcoming film “Where Hope Grows

If I can remember 130 lines for my part in the movie, then can’t you see my abilities, not my disabilities?

Sharon Randall:

Down syndrome does not define my son. He loves basketball, he’s good at math and spelling, and he plays too much Xbox. He also happens to have Down syndrome.

Anne Grunsted with wife, Valerie, and son, Bobby:

People with Down syndrome have their own unique personalities just like everyone else. Our son is silly, sweet and a huge ham for the camera.

Carole Janine Guess, National Down Syndrome Congress Board:

Down syndrome will not determine what my child will be when he grows up. He will.

Mardra and Marcus Sikora:

Madra: Down syndrome is one thing. Marcus is everything.

Marcus [singing]: I want to thank you for letting me be myself…again. – from Sly & the Family Stone’s “Thank You (Falettinme Be Mice Elf Agin)”

Sara Weir, President of the National Down Syndrome Society:

In 2015, people with Down syndrome are going to college, working, getting married and living independently. But as a national advocate for people with Down syndrome, we have so much more to accomplish.

The Parman Family:

[My daughter] is awesome. There is nothing we would change about her, and there is no way our family could be complete without her.

Thank you to our contributors, and Dalton for the music!

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Everything I Thought I Knew Before I Met Down Syndrome

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Dear Down syndrome,

I was so smart before I gave birth to you. I knew almost all there was to know about everything.

I knew books were pure knowledge and that a doctor’s knowledge knew no bounds.

I knew the Internet was a great place to find important, pertinent information.

I knew stereotypes were overblown and didn’t have to be harmful.

I knew the school systems in place were tried and true and that educators knew better than I do.

I also knew support groups were for the weak and more important, that I would never need one.

I knew there couldn’t be injustices in the world and that everyone was pretty much treated equally.

And I knew one’s own community should lead the charge without much room for trailblazers.

Since I gave birth to my son seven years ago, I’ve learned so much about you. I also know I still have a lot to learn.

I’ve learned that books aren’t always spot on — they might even be outdated.

I’ve learned that stereotypes are rarely criticized and yet always harmful.

I’ve learned that people who wear long white coats, carry clipboards and drive fancy cars aren’t always right or even sensitive.

I’ve learned that the Internet can be a struggle to navigate and a painful path to ignorance.

Because of you, I’m getting an inkling that the school systems and staff have some changing to do.

I’ve learned that support groups can be necessary to survive, and that I specifically couldn’t exist without one.

I’ve especially learned that there are many injustices in the world and that not everyone is treated equally.

And I’ve learned that in our own community, there is plenty of room for trailblazers, just like the one my son has proven to become.

So, Down syndrome, I want to thank you for teaching me and the world around us every day.

Who knew that in seven short years I could learn things it takes others a lifetime to learn.

Love,

Shawna Lochner

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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 [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How I’m Honoring My Son This World Down Syndrome Day

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World Down Syndrome Day is happening on March 21st. This is a day to celebrate our children with Down syndrome and honor those who have touched our lives in more ways than one. Eleven years ago, when we initially learned our son had an extra chromosome, we were heartbroken, scared and nervous. But then we got to know him. Our child… the little boy who is our son. We celebrate him every day.

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If you have a son or daughter with special needs, you will understand completely what the word “pride” means. It’s the most incredible feeling to watch our children accomplish something that comes so naturally to others.

I’m a mother of four children. Last summer, we started riding bikes as a family on our bike trail. My 6-year-old daughter was beaming as she pedaled her princess bike without training wheels down the path for the first time. We were proud of her. When I watched her brother with Down syndrome, who was 11-years-old, pedal down that same trail with his knee pads on, focusing on the motions, concentrating on the road and working so diligently to keep upright on the bike, my heart was filled with the utmost joy and elation. He’s doing this! He’s worked so hard to get to this point. A parent couldn’t be prouder of such an incredible accomplishment, knowing how long the journey was for him to get to that same point as his little sister.

I came across a song the other day entitled “Proud” by Heather Small. I couldn’t stop crying. I had such mixed emotions. It fit exactly with the sentiments I’d been feeling for my son. It inspired me to make a video to honor Cole and some of those people involved in his life. What perfect timing to finish it in time to celebrate World Down Syndrome Day. Please enjoy!

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The Moment I Realized I Was Wrong About You, Down Syndrome

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Dear Down syndrome,

I wasn’t scared when the doctor first spoke your name. I sat there staring at the high-risk obstetrician, soaking in his words but believing our child would be exactly who God intended him to be. Still, I couldn’t help but notice how quickly everything changed.

Just days earlier, I was greeted at my prenatal appointments with joyful smiles and words like, “Let’s see how that baby is doing!” Once you were discovered, the appointments were never the same. The joy and the smiles were replaced by awkward silences and strictly clinical evaluations. Once friends and family heard about you, nobody seemed to know what to say. Questions about baby names and nursery colors were replaced by questions about you.

All our plans to have our baby in the local hospital went out the window. Our child would need surgery at birth because of you. So, I gave birth to our son in an unfamiliar place surrounded by complete strangers. Because of you, I needed an emergency c-section. Because of you, I didn’t get to hold our son when he was born — he was sent directly to the NICU. Because of you, he spent 47 days there.

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I was pretty mad at you, Down syndrome.

After 47 days of being a visitor in my son’s life and hearing only grim predictions for his future, I was worn down. I was angry you had our son. But then, the day we’d been praying for arrived and he came home. And that’s when it happened.

I took him out of the car seat and I held him in my arms in our home. No wires attached to machines, no beeping, no strangers — just my baby and me sitting in our living room. That was the moment I realized just how wrong I had been. First and foremost, you never had him. He had you.

Second, I was wrong to be angry with you. I should have been angry with the doctor who suggested we abort our son just because he had you. I should have been angry with the nurses who wouldn’t look me in the eye or ask about our baby anymore just because he had you. I should have been angry with every person who acted like I’d lost my mind because I was still happy to be having a baby even though he had you. I should have been angry with every medical professional who based our son’s prognosis on outdated information about you. I finally realized you, Down syndrome, were not the “problem” that had caused our family so much pain.

You, Down syndrome, are a part of our son. Our beautiful, happy, dear, beloved son. I believe you are a part of who God created him to be. There’s no more anger toward you. There’s only acceptance, understanding and love.

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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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The First Time I Met an Adult With Down Syndrome

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It was four days after I was discharged from the hospital.

We were gone, but our son, Anderson, was still there. We went to visit him in the NICU before going to church that morning. It was a particularly low time. Although we knew Anderson was one of the healthier babies in the NICU, it still wasn’t easy leaving this new little person behind. We were in a holding period. We were waiting for our lives to start as a family of four, but scared because we didn’t know what this new life would be like. How much would this Down syndrome diagnosis affect him? How much would it affect us?

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We were looking to find strength and hope that morning from the pastor’s message. Instead, I found it sitting two rows in front of me. I looked up and I saw a young adult man with Down syndrome sitting with his dad. As creepy as it may seem, I moved up a row so I could be closer. I wanted to meet them.

Before the sermon started, I saw the young man point to a passage in the Bible and ask his dad about it. My husband Andy walked in at that point. I could tell he noticed the man right away, too. I couldn’t take my eyes off him.

I noticed the crease in his hands looked like a straight line, just like my son’s. I noticed his eyes were shaped like almonds, just like my son’s eyes. I noticed he was a little smaller, just like my son.

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It was time for the greeting. You know, the awkward point in church where the pastor says to stand up and shake each other’s hands. I normally hate this tradition, not because I’m anti-social, but because it feels forced. But this day it was the moment I was waiting for. I think I had my hand extended before the father-son duo was even able to stand. The son took my hand and said the quietest “hi” you can imagine. I was shocked.

When you tell people you are having a child with Down syndrome, they normally respond with, “They are the happiest people.” They’ll give you a list of characteristics people with Down syndrome possess: joyful, vivacious, outgoing — but this man was the opposite of these things. He was shy.

I sat down and I couldn’t help but feel a little disappointed. Wasn’t this syndrome supposed to give everyone it touched a dash of magic and sparkle? Wasn’t that the consolation to the fact that it’s a disability?

As I sat there in my own thoughts, I started to examine this man again. He had on slightly baggy and outdated jeans, just like his dad. He had black and neon green tennis shoes on, just like his dad. His face was kind and his handshake a little weak, just like his dad’s. And yes, he was shy just like his dad.

So, although he shared some physical similarities with my son, although my son may face similar challenges to him, they are their own people.

Down syndrome is just a part of who they are. It’s not who they are.

I believe Anderson, like this man, will be a product of his dad, myself and whatever other traits God gives him.

The band started playing again. The song was “Your Love Never Fails.” The bridge of the song goes like this: “You make all things work together for my good.” As I looked at this man and the apparent love between him and his father, tears started pouring down my face, and then Andy’s face. He felt it, too — we were thankful.

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Thankful because this diagnosis that had rocked our world for months and made us feel as if the world we knew was ending is really just a part of our world. Down syndrome won’t define us, but we will learn, we will grow and we will be better because of it.

Thankful, because we knew the words we were singing were true: You make all things work together for my good.

 A version of this post originally appeared on From News Anchor to Homemaker.

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Down Syndrome, We Have 2 Words to Say to You

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ds1 Dear Down syndrome,

My wife is sitting next to me, and she just stuck her tongue out at you. “So there,” she said. When I asked her what she was talking about, she said she was reading online and saw two wedding announcements from people with Down syndrome.

“So there,” indeed. In the shortest way possible, I suppose, that sums up how I’m starting to feel about you.

Now, I’ll be honest, that wasn’t always the case. When my wife and I first learned you were going to be a part of our life, part of our daughter, Maggie’s, life, we were in shock, then pretty upset and even scared. Rather quickly, however, through the help of groups like the Massachusetts Down Syndrome Congress, we started to understand that you really weren’t all that scary. Turns out our apprehension was based more on our lack of knowledge – a good ol’ fear-of-the-unknown type deal – and not in the realities of what you are. So there.

I’ll bet as you’re reading this, you’re thinking something like, “But I’m different! I’m a force to be reckoned with! I’m in your daughter’s genes, you can’t get away from me!” Well, guess what, her beautiful blue eyes are also in her genes. And so are the infinite other characteristics that make her who she is. So far that combination seems pretty wonderful. As far as I can tell, you’re just another member of the cast that makes up the Maggie Show. Yeah, sure, you may be in more scenes than some of the other characters because you do have, admittedly, some kind of effect on pretty much everything, but in truth your role is pretty minor. So there.

What’s that you say? That you are a “disability” and so you matter? OK, maybe in some legal definition of the word, yes, you are a disability; fine, I’ll grant you that. In truth, I really don’t see you in that light – first of all, why do you have to be so negative all the time? What I mean is, I don’t see you as disabling Maggie; I see you more as differently enabling her. Sure, it may take her a little longer and require a little bit more work to learn things than others, but she can learn them all the same.

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Her smile has managed to break down even the most hardened of people in ways I didn’t know were possible, whether it’s the old grump in the parking lot at the grocery store or the smarter-than-thou hipster at the coffee shop. I’ve seen smiles from people I’ve known for almost all my life that I didn’t know they had. If you want to call that a “disability,” then bring it on.

Sure, your hanging around with us means we have to do certain things other families might not have to, but you know what? It’s kind of fun because when Maggie gets it, whatever that particular “it” is, it’s a moment of celebration, of pure joy and that makes it worth it — not only for her in terms of her growing as a person but also because it’s a reminder that we should always appreciate even the littlest of life’s triumphs. Show me a family that doesn’t have things to deal with, and I’ll show you a family that’s probably either oblivious or in denial about their world. My point is, we all have stuff in our lives, and your stuff really ain’t all that bad. So there.

Do we have worries about her future? Of course we do. But here’s the thing – they aren’t really born out of your presence; they’re born out of the mere fact that we’re parents. We talk about our concerns over the first time she goes to school, or (gulp!) likes a boy, and how you play into that. After a minute or two, however, we realize you probably play far less a role in that particular scene than the fact that she has beautiful blue eyes.

In the end, I’m not trying to say you’re not there or that you don’t matter. What I’m trying to say is that as I get to know you better, you don’t seem to matter as much as I thought I you would, and really, from my family’s experience thus far, you’re not such a bad dude after all.

So there.

Sincerely yours,

James

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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