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New Show Will Put Spotlight on People With Down Syndrome

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A new television show is putting people with Down syndrome front and center.

A&E Networks recently announced it will be airing “Born This Way,” a new six-episode documentary series this December about young adults with Down syndrome.

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Scene from the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

Each hour-long episode will feature seven people from Southern California as they pursue career goals and romantic relationships, form friendships, overcome obstacles and make their way in the world. The show will also allow the families of the individuals a voice as they weigh in on the joys and challenges their family members with Down syndrome face.

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Elena and Megan star in the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

“We are proud to be airing this important and extraordinary series and hope it will inspire meaningful conversations about people with differences,” Elaine Frontain Bryant, head of programming for A&E Network, said in a press release. “‘Born This Way’ is a show with honesty, humor and heart that celebrates and embraces diversity.”

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Scene from the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

Among those featured on the show is Steven, who works two jobs and knows the title and year of every Oscar-winning film; John, who’s pursuing a career in rap music; and Cristina, who works at a middle school and has a boyfriend of four years who she plans to marry, according to Disability Scoop.

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Rachel, Sean Cristina and Steven star in the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

The network partnered with nonprofit Best Buddies International and has committed to airing PSAs featuring Best Buddies program participants to help raise awareness and promote inclusion.

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Cristina and Megan star in the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.
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Elena, John and Cristina star in the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

“Born This Way” will air on A&E Network starting Dec. 8 at 10 p.m. ET.

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One-Drop Blood Test May Detect Alzheimer's in People With Down Syndrome

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A study is being done on a one-drop blood test that could detect Alzheimer’s disease earlier in people with Down syndrome.

Doctors at the Barrow Neurological Institute in Phoenix are performing the test on people with Down syndrome because of their high risk of dementia, the Associated Press reported. The test is designed to detect genetic indicators of the beginning of memory loss in people with Down syndrome before they notice it themselves.

Alzheimer’s disease occurs three to five times more often among people with Down syndrome than the general population, according to Alzheimers.gov. People with Down syndrome are also more likely to develop Alzheimer’s disease at a younger age than adults who don’t have the condition.

Early detection of the disease could mean better preventative treatment for patients.

“We would love to be able to detect on a blood test if you’re going to get Alzheimer’s five, 10, 20 years from now,” Dr. Marwan Sabbagh, the study leader, told the AP. “Then we could apply a prevention strategy in advance of the onset of symptoms.”

It’s too early in the study to determine now whether the one-drop blood test will lead to earlier detection for the general population, not just people with Down syndrome.

h/t KSTAR News

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About the 'Positive Outlook' People Think I Have as a Special Needs Mom

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Warning: If you’re looking for a cheery, inspirational story, come back some other time. This one promises to be dark, ugly and depressing. Still reading? Don’t say I didn’t warn you.

I’m angry.

I’m angry that life is so bleeping hard sometimes.

This is what a fever of 104.3 looks like. Blah.

I’m angry that swearing is naughty, because it feels really good to say those words at the moment.

I’m angry that neutropenia exists.

I’m angry that my daughter, Willow, can’t just have an extra chromosome and move on with life.

At the clinic, wondering why my baby feels so awful.

I’m angry that a stupid mouth sore can lead to a hospital stay.

I’m angry that they don’t serve wine in hospitals.

I’m angry that all the work she put into gaining weight these past three months has been wiped away.

I’m angry that there are good nurses and bad nurses, good doctors and bad doctors, and I have no frigging clue who to trust.

I’m angry that the only drug that can help my daughter produce enough white blood cells to fight off infections gives her bone pain and makes her miserable.

I’m angry that a stupid infection could make Willow’s already weak muscles, weaker.

I’m angry that Willow has missed two weeks of therapy.

I’m angry that it’s cold and flu season.

I’m angry that in the past two weeks, this family has battled strep, a mystery virus and a nasty mouth infection.

I’m angry my husband announced last night that he’s coming down with a cold.

I’m angry that my laundry doesn’t do itself.

I’m angry that I don’t have the guts to say, “Craptacular” when people ask me how I’m doing.

I’m angry that God seems so distant sometimes.

I’m angry that it feels to me like being a Christian can make life harder sometimes.

I’m angry that we need to experience the bad stuff to get to the good stuff.

Willow with her purse, ready to leave.

I suppose if you’ve read this far, I owe you an apology. I’ve probably ruined some of your opinions of me. I always laugh when people say, “You have such a positive outlook.” The truth is, I get angry, depressed and downright pissy at times. Oops. Is that a swear word? Sorry. There’s no turning back at this point.

Do you want to know another thing that makes me angry? Some of you might read this and pity me. Or worse, you’ll take this post and twist it, drawing the conclusion that raising a child with special needs is hard and therefore not worth it. That’s just a pile of… well… you know what. Man, I need a bar of soap in the mouth.

Would you believe, I actually yelled at God this week? Overwhelmed, full of anger, saturated in exhaustion, I yelled at Him. “I’m just so angry at you!” You know what happened? I believe He took it. Like a good father would.

See, I’m pretty sure He knows I’m just having a moment. I believe He also knows I still love Him the same. And the best part? He knows the purpose behind this pain. There is purpose. Obviously, I’m angry that I can’t see it right now.

Now, where’s the candy? I need some chocolate.

Follow this journey on The Mighty Willow.

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 People Who Ask If My Child Is 'High-Functioning'

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It happens every time my daughter’s Down syndrome is brought up. The intent behind the question is almost always well-meaning — but it still gives me pause. I don’t know how to answer the question.

She has her strengths and her weaknesses, just like anyone else. She works harder than most people I know on a daily basis. 

How would you classify my other kids? If one were struggling in a subject, would it somehow make them less of a person? Am I high-functioning? Are you? Does it even matter?

What if I came out and said, “She’s low-functioning.” What would that do for her? What would be assumed? That it doesn’t matter how she’s treated? She’d be treated as though she were incompetent in all realms, and most likely, not even given a chance to try something new, because there would be assumptions that she wouldn’t catch on, she wouldn’t know how. I believe I’d be giving permission for everyone to sell her short before she even had a chance. As a mother, I can’t do that to my child.

Author's daughter riding a toy bike.

My daughter is prone to fits and tantrums when she doesn’t get her way. She has hit her siblings, and bit them, just like any toddler. I have already been on the receiving end of confused and even dirty looks for scolding her and making her give a hug to say sorry, as well-meaning people try to brush it aside and make excuses for it by saying she doesn’t know any better. It’s sweet that they’re willing to look past these behaviors and beyond to my beautiful daughter, but it’s also misguided.

That poor little girl who is too “low-functioning” to “know better” will one day be a grown woman, and if she isn’t held to the same standards of behavior as anyone else, what kind of woman would I have raised? She may not understand entirely yet, but she’ll never learn if she isn’t taught.

I understand that a lot of people equate functioning with level of independence, and they worry for me, that I’ll be caring for a child forever. Maybe she’ll live at home forever, and maybe she won’t, but rest assured, my children are my children forever, regardless of where they are. I know adults with Down syndrome who live in their own apartments at 22, and I know typical adults in their 30s who still live at home with their parents.  I have no guarantees that my other children won’t either. I have yet to meet a single person who has grown evenly across the board and never struggled in an area, be it academically, athletically or socially.

Still, it seems we hold people with intellectual disabilities to a different standard than we hold ourselves. Why do we allow ourselves the time and room to practice and get things right, but when it takes someone with an intellectual disability longer, they are written off?

My daughter knows a lot of signs, and her speech is awesome. She’s not anywhere close to walking; she’s happy to crawl to get around. She loves baby dolls and Fisher Price Little People. She loves hugs and kisses. Her favorite song is “Itsy Bitsy Spider.” She is “functioning” just like anyone else. Down syndrome doesn’t mean she’s broken, but when you ask, it’s what you imply. It’s just another label, blocking the view of a wonderful child.

Instead of asking, if you’re curious — spend some time around her. Watch her. She’ll blow you away.

Author's daughter with food on her face

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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The One Little Word That Can Ruin Any Moment

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It’s a normal day. In fact, it’s more than normal — it’s fantastic. The kids are well-behaved, my son, Reid, took his nap on time, I’ve gotten some work done and am taking a few precious moments to talk to a friend. We’re catching up. She’s recounting a story, and we’re laughing so hard tears are rolling down our cheeks and stomach muscles hurt. And then she says it.

“Can you believe she said that? What is she, retarded?”

She keeps talking. I can’t hear what she’s saying. My stomach immediately hurts for a different reason. Not from laughing. Instead, it hurts because I’ve been punched. Not literally — but yes. Literally. I can no longer hear my friend because of inner dialogue. A million questions run through my head as she’s still talking without even noticing my smile has disappeared, my eyes have wandered and I’m no longer with her.

I’m no longer with her because I’m inside my own head.

Is this person really my friend? Of course she’s your friend, you’ve known her for years.  She’s done so much for you, and vice versa. But surely, she can’t really be my friend and know what that word does to me? Kia, you’re overreacting. Should I say something? Yes. I should say something. No, you shouldn’t; it would be awkward. Why should I always care about other’s feelings at the expense of my own? She didn’t mean it the way you’re taking it. She wasn’t talking about Reid. It’s not a big deal. Yes, it is a big deal.

And she’s still talking. Still unaware. Do I ruin the moment for her? It’s already ruined for me.

I am the mother of three amazing children. One of those children, Reid, happens to have Down syndrome. Knowing what he and his friends have to fight to accomplish on a daily basis makes me quite sure they’re actually the smartest, hardest-working people on the planet. I am convinced of this, and no one can change my mind. I absolutely know my child, my friend’s children, Reid Christopher’s peers are not who you’re talking about when you use the word.

three siblings

Yet it still hurts. It takes my breath away. It makes me re-evaluate how important I am to you, and how much I value our friendship.

All that can change with just one word.

If I’m being completely honest, hearing that word hurts more than a racial slur thrown in my direction.

Every time I hear it, I’m taken back to the moment we were given Reid’s diagnosis.  Any parent who has experienced an at-birth diagnosis knows it can be an ugly moment. To have something completely unexpected handed to you after you’re experiencing one of life’s greatest gifts, the birth of a child, is a shock. Going back to that moment reminds me of everything I was deathly afraid of when I learned he had Down syndrome. That fear had nothing to do with Reid himself, but what barriers he’d have to break for acceptance. I knew at that moment I wanted to protect him from the ugliness of the world, whether he knew about it or not. 

The word single-handedly makes fun of an entire community who would never do the same to you.

Our society wants parents of kids with developmental delays to “just get over it.” To understand you “didn’t mean it that way” and that you’ve “always said it.” We’re told we’re being overly sensitive. We’re told we shouldn’t take it personally because you’re not talking about my child. While I absolutely know my child is smart and thriving, you have to understand you’re talking about someone. You may have removed the fact that this word is used to describe a group of people… but I haven’t. We haven’t. And we hurt.

I’m here to tell you I cannot just get over it. Using the argument that you’ve always done something a certain way is not good enough. Using the argument that you aren’t talking about my sweet boy does not give you a pass. You’re human, and while all humans most definitely make mistakes, you also have the capacity to learn, grow and do better.

I want you to learn, grow and do better.

For Reid. For his friends. For the hearts of moms and dads who are broken when they hear the senseless word by people who claim they care about us and our kids.

I know it’s hard to change your perspective. Hard to change something you’ve always said and try to erase it from your vocabulary. I’m asking you to do something hard, uncomfortable and in some cases, even unnatural to you.

I’m asking you to have compassion. To remember Reid’s sweet face when those words are about to cross your lips and stop.

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Remember this face…

And as you’re working to learn, grow and do better, if you happen to slip up… it’s OK to stop and regroup. It’s OK to say, “Sorry. I’m working on not saying that anymore. I understand what that word means to you. I value you and your child, and I am sorry.”

Because that’s what we parents of kids with special needs want. We want our kids to grow up in a world where they aren’t unconsciously being made fun of. We want to know our feelings and our relationships are valued by you. We want normal, perfectly imperfect days of catching up with best friends, laughing so hard that we cry. Enjoying moments that won’t be ruined by having hurtful words carelessly thrown around by the people we value. We want to stay in those moments — moments that aren’t reminders of what are kids are up against.

We want to learn, grow and do better together. We’ll do the same for you.

boy standing between parents legs

Follow this journey on Kiayoung.com.

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 thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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When My Child With Special Needs Gets More Attention Than Her Siblings

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When I go out with my three beautiful girls who are close in age, we attract a certain amount of attention. I’ve gotten used to it. People can’t help but comment about any family that’s larger than two young children. Cashiers and wait staff remember us even if it’s only our second time going somewhere. I get it. We’re a spectacle.

I often have two of them strapped to me, which makes them appear even closer in size and age than they are. If not, I push one in a bright red stroller as she plays with the beads I attached and joyfully yells and smiles at everyone.

My oldest daughter, Kaylee Dee, talks a mile a minute with the vocabulary and clarity of a child twice her age. If the store has kid-size carts, she’s surely pushing one with her baby dolls in it, along with a bag of grapes.

My daughters always have brightly colored bows on their heads, which occasionally match. My middle girl, Everly, has Down syndrome. We’re a unique family. The comments are expected.

“Three girls? Your poor husband is outnumbered!”

“Are they all yours?”

“Look at all those beautiful bows.”

“You’ve got your hands full.”

I also get the occasional unique comment — one that makes me genuinely smile — from people who really look at my family before speaking.

“Three girls. What a lucky family.”

“How close in age are they? You look like you’ve got it all under control.”

I don’t mind either type of comment. The vaguely observant, stereotypical or the ones that spread joy.

I also understand some people’s urge to single out my middle girl. I really do. She’s cute. She’s loud. She’s got the almond eyes, low-set ears and flat nose that indicate her Down syndrome; it’s hard to miss. She has an infectious smile and is learning to communicate, so she might even “say” something to you by using her hands.

But please don’t ignore my other two kids. My youngest daughter, Finley, is observing with her big, beautiful eyes, her own squeals of joy and a ready smile. And Kaylee Dee is a little mother hen and is dying to be noticed in public for her manners and helpfulness. Please don’t ignore them and only compliment Everly’s cuteness.

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Especially don’t do this when she’s throwing a fit. I’m sure you wouldn’t praise a typical 2-year-old while in the throes of a terrible twos meltdown; please don’t tell me she’s cute when she’s trying to hit her big sister and yelling.

Inclusion is when you treat all my girls with equal attention, not when you single out Everly and ignore the other two. This hurts all three of them in the long run.

It teaches Everly she is allowed to misbehave, since she’s being lavished with praise and even given things. And it teaches my other two they aren’t special.

They’re young now, but soon Kaylee Dee will start to notice the discrepancies, and Finley will, too. Resentment will build. I know you mean well, but I’m trying to raise three girls, not just one.

Our local grocer “gets” it. She acknowledges all three girls’ contribution to my family equally. She always has something to say to each one, a sticker for all three and frequently offers to help me to the car even though it’s not a store where that’s the norm. I go out of my way to be in her line, even if it’s longer.

Because as much as I love the acceptance my middle girl is always shown, please don’t forget my other two. They may not have an extra chromosome, but they do have feelings.

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The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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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