Why have I put off writing this? “I am pretty busy,” I tell myself as I scroll through Facebook yet another time. “I am trying to nap while she naps,” I repeat as I busy myself with washing the toilets…yet again. Perhaps I have set this aside because in my mind, at 21 days out of the womb, I would already fit back into my size 4 Lulu lemon pants and my healthy, hearty, brand new baby and I would be walking around the neighborhood wishing our friends a wonderful day!

However, I think the real reason I had set this aside is because in my mind, my baby would not have been born with the diagnosis of Down syndrome. In my mind, that would not be part of my story.

You see, I am no stranger to the world of disability. For the past seven years, I have had the joy and privilege of teaching high school students with moderate to severe cognitive and physical disabilities. I have had my fair share of laughter, joy, stubbornness, hugs and unwarranted kisses from kiddos who have Down syndrome. When in the classroom, I had often thought, what if this is why God made me? What if this is the reason He put me in this role as a special education teacher? What if He wanted me to have a kiddo or adopt a kiddo who would one day fill the classroom with laughter and joy? These questions were just meant to be hypothetical! I never thought in my wildest dreams that they would become my reality.

 

When Chloe was in my tummy, I had a dream that she had Down syndrome. She was beautiful! So full of smiles and so free. I told my husband about this dream and we discussed the “what if’s” but again, we didn’t think it would be us who God would chose. When I held her for the first time, I didn’t look to see if she had Down syndrome.

Surprisingly, that is a question a lot of people ask me. Did you know when she came out? What mother, especially a new mother, looks for those signs? I did notice she was breathtakingly gorgeous. I also noticed her beautiful little button nose, her cute eyes, and the fact that she looks so much like my husband I have to remind myself I did carry her for nine months.

The next few hours were a total blur. I remember my midwife kneeling next to my bed and saying she believed Chloe had Down syndrome. She told me Chloe’s heart sounded great and that over the next few days people would be coming in and out of our room to talk to us about her diagnosis and the next steps. What she said next I will never forget — she told me Chloe was beautiful and we were going to be amazing parents to that little child.

She’s right. Chloe is beautiful and though we often feel like we aren’t doing things just right, we love her as fiercely as any parent would! Over the last three weeks I have cried more than I have ever cried in my entire life. They are tears of joy, disappointment, gratitude and grief. Part of me wants to completely blame the hormones for these feelings, but there is a small part of me that acknowledges the dreams I had for my child and the grief of potentially having to give a few of those up.

I think it’s OK to cry these tears and to speak our truth about the hard things in life. I think it’s OK to feel these emotions, but at the end of the day recognize we really only have today with our little ones.

My husband continually reminds me her life is still going to be an adventure. She will still dance, still be a cheerleader and still fall in love (dreams I’ve always had for my daughter). Maybe it will look a little bit different than what we planned, but it will still be an adventure.

I feel so honored to go along for the ride.

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Lauren Appelbaum is the communications director of RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities for people with disabilities.

“Born This Way” takes home two more Emmy’s, one for Cinematography and the first-ever Emmy for Casting.

A&E Network’s critically acclaimed and award-winning original docuseries, “Born This Way” keeps adding up honors, showing there is a place for disability themes. After bringing home the Emmy for Outstanding Unstructured Reality Series in 2016, this series, starring a cast with disabilities, received six Emmy nominations this year and won two Emmy’s at Saturday night’s Creative Arts Emmy Awards for Casting for a Reality Program and Cinematography for a Reality Program.

Produced by Bunim/Murray Productions, “Born This Way,” an unscripted reality show, follows a group of seven young adults with Down syndrome along with their family and friends in Southern California. Because its focus is on showing their everyday lives, including employment, efforts for independent housing, loves and more, “Born this Way” breaks down stigmas surrounding disability.

A Focus on Diverse Casting

Show creator Jonathan Murray, the innovator behind the first-ever reality-show, “The Real World,” and many other hit shows including, “Keeping Up with the Kardashians,” said the cast members of “Born This Way” remind all of us that, “every individual has something to contribute.”

“In thinking about the show, we wanted to focus on the ability within the disability and I think that is what is exciting to see,” said Murray. “We also are very proud of the fact that our cast is very diverse. ‘Born This Way’ has a cast that includes people who are African AmericanHispanic and Asian. This is a breakthrough for those minority communities as well.”

This is the first year the Television Academy presented an award for Casting for a Reality Program, which Sasha Alpert and Megan Sleeper won for “Born This Way.”

“Everyone experiences powerful stories,” Alpert said. “By not including a diverse group of people, we are limiting our ability to tell compelling stories. If we make television that doesn’t embrace the various populations around us, we limit the narratives we tell.”

Also during Saturday’s first half of the two-night Creative Arts Award presentation at the Microsoft Theater, Bruce Ready, cinematographer of “Born This Way,” took home the Outstanding Reality Cinematography Emmy. The awards on Saturday evening were presented for reality, documentary and animated programs.

Bruce and Sean wearing tuxes, posing for the camera. Bruce holding an Emmy.

Making More History

“Born This Way” cast members Rachel Osterbach and John Tucker made history when they became the first individuals with Down Syndrome to present at any major awards ceremony when they presented awards in three categories at the Creative Arts Emmys.

An African American man and a white woman dressed in a tux and gown back stage

“Rachel and John graced the stage like true professionals to rousing applause,” said Gail Williamson, a talent agent who focuses on clients with disabilities at Kazarian, Measures, Ruskin and Associates Talent Agency. “When doctors told their parents about the diagnosis of Down syndrome and listed what they thought their children’s future would be like, they never thought to include they would be presenters at the Emmy Awards some day.”

“In an evening that emphasized ‘inclusion’ and ‘diversity,’ it was powerful to have Rachel and John, who both have Down syndrome, included in the diverse group of award presenters,” Murray added.

RespectAbility, a nonprofit organization fighting stigmas and advancing opportunities for people with disabilities, has been honored to consult during the creation of “Born This Way” and congratulates the entire team for its hard work in achieving this continued recognition.

Jennifer Laszlo Mizrahi, RespectAbility’s president who herself has a disability, and who knows what it means to raise a child with multiple disabilities, said: “I am thrilled that the Emmy’s see the value in showing real people with disabilities and their powerful lives on TV. For generations TV-viewers saw people with disabilities through the lens of the Jerry Lewis telethon. Though it was well intended, it showed people’s inabilities and used a lens of pity. ‘Born This Way’ is empowering and uplifting. It shows, as one member of the cast frequently says, that the public should not ‘Limit me.’”

Increasing Disability Inclusion in Television

The Ruderman White Paper on Disability in Television shows that disability often is absent from mainstream film and television — both the depiction of it, and even when a character has a disability, the actor often does not. According to the report, an actor pretending to have a disability plays more than 95 percent of characters with disabilities. Furthermore, according to a recent report by The Media, Diversity, & Social Change (MDSC) Initiative at USC’s Annenberg School for Communication and Journalism, only 2.7 percent of all speaking or named characters in film were shown to have a disability in 2016 (up from 2.4 percent in 2015). None of the leading characters were from an underrepresented racial/ethnic group or the LGBT community.

“By winning the Emmy for casting, A&E’s ‘Born This Way’ has broken the glass ceiling for people with disabilities of all backgrounds,” Mizrahi added. “Programs like ‘Born This Way’ that feature people with disabilities, or that tackle disability issues in a positive light, can be successful both critically and financially. Audiences want to see strong, capable role models with disabilities. By focusing on showing these young individuals’ everyday life choices regarding employment, living independently and dating, ‘Born this Way’ breaks down stigmas surrounding disability.”

Murray agrees that shows like ‘Born This Way’ and more diversity in Hollywood are good business.

“Hollywood has been really, really slow to recognize the diversity of this country,” he said. “I think it is catching up fast now. And I think it’s realizing that diversity is good business. I don’t think it’s necessarily because it is altruistic. I think they are recognizing that TV shows will do better if they reflect what the country is.”

According to the U.S. Census, one in five Americans has a disability. Currently 70 percent of working-age people with disabilities are not working — even though most of them want jobs and independence. The numbers are even worse for people with Down syndrome. According to the National Down Syndrome Society, there are more than 400,000 people with Down syndrome. Many studies show people with disabilities, including those with Down syndrome, can work successfully and live relatively independently. The individuals on “Born this Way” prove this since several are productive employees and one is a business owner herself.

“We have a long way to go in how television shows people with disabilities,” Mizrahi said. “For almost five decades, the Jerry Lewis telethon stigmatized people with disabilities by showing what people with disabilities can’t do. Now is the time to show what people with disabilities can do.”

Recently, “Born This Way” was chosen as one of six honorees for the 2016 Television Academy Honors, an award that recognizes “television programming that inspires, informs and motivates.”

“By honoring and embracing diversity on television, ‘Born This Way’ is uniquely redefining the art of honest storytelling and altering the way society views individuals with differences,” Elaine Fontain Bryant, EVP and Head of Programming for A&E said.

“What I would like to see is that more shows have a diversity to them where the diversity is not the point of the show,” Murray added. “I’d like to get beyond the labels to accurately reflect what is going on in our country today.”

Watch the Creative Arts Emmy Awards on FXX on Saturday, Sept. 16 at 8:00 p.m. ET before the highest-profile categories are awarded in a ceremony telecast live on CBS on Sunday, Sept. 17.

 Photos provided by Lauren Appelbaum.

When my youngest daughter was born with Down syndrome, all I knew were stereotypes. I wrongly assumed our life, and my daughter’s life, would be defined by limitations. I was wrong. What defines our life is love.

I won’t say parenting a child with Down syndrome is easy because parenting is not easy, and parenting a child with a disability does present extra challenges. But even though there are hard days and hard moments and hard hours, those do not define our lives. What really matters — what is most important — is love.

There are beautiful and perfect moments. There is the good, there is the joy, there is the pride we feel for our kids. There is the excitement of even their smallest accomplishments. And always, always the unending love.

If you ever see a child with Down syndrome and think you could never do it, yes, yes you could do it. Because of love.

And I wish people could see what I see, this life we live.

I wish people could see we take family vacations, we grill chicken in the backyard, we eat dessert and we celebrate birthdays. I wish people could see the love we live with.

And I hope next time you see a parent of a child with Down syndrome, rather than thinking of how hard you imagine it could be, you think about what matters most. I hope you see the love. I hope you think of these beautiful moments shared by our Mighty parents:

“Every member feels that fierce love for our Hudson.” – Dionna M.

“[My son] and I enjoying life!” — Ingrid M.

“This was a few weeks back. My wife was working so my co-pilot and I took a trip to a Jeep show. He gets to ride in the passenger seat in the Jeep, since I can turn off the airbag, and he almost always falls asleep. He also instantly wakes up when I turn the engine off.” — Kevin P.

“This is right before his appointment with his respiratory specialist. Every week it’s multiple doctors appointments and physical therapists. No matter what challenges he is facing that day, this is the smile I get from him. He’s a strong little man and in return he’s made me a stronger person.” — Amanda S.

“My 26-year-old son with his niece… just love!” —  Denise B.

“This is my son Johnny with his siblings. Johnny has blessed each and every member of our family and made me a better person. Each child I am blessed to have has had their share of ups and downs, but they all bring more joy and love every day!” — Emily M.

“Miley, 9, showing her goat, Rita, at the fair for the 4H goat show. She worked all summer getting her ready. Her hard work paid off and she got a blue ribbon and a callback for showmanship.” — Missy A.

“Haven’t met a person yet who can have our sweet Evan smile this smile at them and not smile back with everything they have. He is changing the world one smile at a time and our lives are immeasurably better with him in them!” — Blair P.

“So much love for this little [girl]. We’ve had some challenges but she’s taught me more about life in her short seven years than I could ever teach her! Hope is amazing” — Stacy R.

“I feel like this picture shows the love between Izzie and one of her older brothers, Grady. Both of her brothers are a great help to my husband and I when it comes to Izzie, but not because we make them or even ask them. They just step in and do what they can because they love their sissy so much!” — Tiffany J.

“My favorite kids.” — Kimberli P.

“This is our Samuel. He is such a joy to our family and all who know him! He truly lives life to the fullest and is a daily example of how life should be. Can’t imagine life without him! Thankful God chose us for his parents.” — Jenny E.

“This photo is of me and my daughter, Heather, at Disney World early this year. She is truly the heart of our family. She turns 40 in October. We will be celebrating her birthday at Disney this January. I absolutely love traveling with her!” — Suanne J.

“My sweet Harlan. His due date was World Down Syndrome Day but he arrived a month and a half early. It was suspected shortly after his birth that he had Downs Syndrome and later confirmed through genetic testing. We wouldn’t change him for the world. He is loved beyond measure.” — Crystal  E.

“My son, Cree, who will be 3 in less than two weeks with his big sister who will be 7 the week after. I think this shows their overwhelming love for one another. He is the love of our lives.” — Angel W.

“Our oldest, Cori, and our youngest, London. These two have such a love/hate relationship like any typical toddler sibling duo would, but at the end of the day, London looks up to her big sissy and always needs to give her a kiss good night. Cori has so much bravery, love and strength. I’m so thankful she shares it with us all. She is truly the glue in our family!” — Jamie D.

“Love.” — Caroline H.

“This is Owen. He is 7 and loves baseball, especially the St. Louis Cardinals. He loves playing ball with his brothers, dancing and playing in the backyard.” — Christy L.

“Samuel’s turning 12 this year. All a wonderful journey. He brings a smile and a hug to everyone he meets.” — Barry L.

“My baby sister, Helen. She was the love of my life, I miss her sweet smiling face, she passed away last year at the age of 59, she is now God’s angel” — Julie H.

“Vincent brings us so much joy. He smiles at me until I smile back.” — Susan F.

“Loves of my life!” — Lauren G.

“Our son, who was adopted from Ethiopia, is very much loved by his sisters (and his whole family)!” — Anna V

“Our beautiful Maria.” — Lorena C.

“No words necessary for this picture.” — Jennifer H.

“The love my parents and son have for each other!” — Lori G

“Adelyn Paige. She has brought us so much joy since the very first ultrasound! We wouldn’t change her for the world.” — Katie S.

“Hiking with cousins and auntie and brother and mom. Family hiking in Colorado.” — Rebekah L.

“Will helped his dad and big brother build this Lego rocket over the summer! They had a great time together.” — Judi H.

“This is my daughter, Bre. She is 9 years old, will be 10 in November.” — Candis H.

“Our sweet Hannah has brought blessings for our family! She is adorable.” — Dayana A.

“My sister and niece with my son, Finnegan, at the F.R.I.E.N.D.S of West Tampa BBQ.” — Kathy B.

“Mackenzie — can’t imagine life without her.” — Karen L.

“My sweet 4-year-old, Sawyer, giving his baby sister a big smooch. Every day is a love filled day with Sawyer.” — Missy G.

“My best bud.” — Jennifer S.

“Charlie, 3 years old, with all of his siblings!”– John M.

“Our greatest joy, Anthony, 4 years old.” — Amy B.

This is life.

Full.

Rich.

Beautiful.

Ours.

Overflowing with love.

Thank you to our Mighty community for these photo submissions.

 


Sean was born with Down Syndrome. His struggle to speak has been a long, arduous journey — diagnosed with  Apraxia of speech and a Phonological processing disorder due to being deaf in his right ear and hearing loss in his left ear — he couldn’t even hear sounds the right way from the beginning.

As a baby, we taught Sean sign language — uncertain whether he would ever speak, or be able to speak clearly enough for anyone to understand his words.

Speech therapy and Occupational therapy for oral-motor exercises were a constant reality for Sean. A palate expander for a high and narrow palate followed by three rounds of braces landed Sean with articulation that our family and close friends could decipher; but I still had to translate everything he said for strangers because they couldn’t understand his words. I likened it to listening to a person with a foreign accent. After a while, you learn the ways they pronounce words and can understand better their patterns of speech. We joked that Sean spoke his own language; we said he spoke “Seanese.

Sean wanted to be on Television from a young age. He performed onstage starting at age 3 in singing and dancing groups, church and school choirs. He took drama class in intermediate school and unfortunately the high school drama teacher wouldn’t give the recommendation that Sean needed to continue past Drama 1 to Drama 2 or Musical Theater classes. But that didn’t dissuade Sean. After high school, he enrolled in community college classes and continued honing his craft. But his articulation continued to be a struggle.

When he was 18, I drove him to an audition for a new sitcom being produced by Ryan Murphy. The lines were hysterical –especially coming from someone with Down syndrome. But as he delivered the lines — his timing and expressions spot on — I couldn’t even decipher what he was saying, so I knew the casting director couldn’t understand him either.

On the drive home, Sean was confident he would be cast in the role. I had to be honest with him, “I don’t think so. I couldn’t understand your words, and if I couldn’t understand them, I know they couldn’t, and the scene is way too funny for the audience to not be able to understand what you are saying.”

Sean thought silently for a few minutes then asked, “Will you help me?”

 

From that day on he would check in after a lengthy sentence, “Was my speech clear? Did you understand me?”

Sean allowed his father and me to repeat and correct his mispronunciations. These exercises were very meaningful for Sean, he wanted to work hard to reach his goal of being on TV, and this was more significant than the drills of speech therapy. Because of verbal Apraxia, Sean needs to hear any new words around 100 times before he can properly imitate them. This is why he called the dice game “Craps,” “Cramps.” And his “HUD Voucher,” “Head Basher.”

Sean’s hard work paid off and his dream of being on TV came true when he charmed the cute young women who were the casting directors for “Born This Way” on A&E.  

Sean wearing one of his shirts that reads, "Determination is on the 21st chromosome"

Sean continues to work on his articulation. And when we understand him, he is the funniest person I’ve ever met. Now with his new business, others can enjoy his comedic comments embossed on t-shirts, mugs, hats and bags. Many of the sayings aren’t new to the Urban English language dictionary. But when Sean delivers them, I can’t help but laugh. And I hope it isn’t lost on you that less than five years ago he was unintelligible, and today we celebrate his speech by immortalizing it on swag.

Editor’s note: This story has been published with permission from Sean, the author’s son.

Learn more at Seanese.com.

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“Born This Way” star Sean McElwee, a 24-year-old man who has Down syndrome, was set to give a keynote speech at a Gigi’s Playhouse Gala when he told his mom Sandra McElwee, “My speech is boring; I need a new speech.” Sean shared his ideas, and as they sat down to re-write the PowerPoint presentation Sean said, “Now we need shirts and hats and bags,” an idea that sparked the creation of his t-shirt company, Seanese.

Sandra sees her role in Sean’s company as “chief dream facilitator,” so when Sean wanted to start his business, she called a friend of hers who is a graphic artist. Her friend explained how to get designs made and how to use a print-on-demand website to print and ship the shirts. “Thankfully that [option] exists because Sean is coming up with new designs every single day,” Sandra told The Mighty. “We would go broke or need a warehouse if we stocked every design he creates.”

Sean decided to name his business Seanese because he speaks his own language: Seanese. “When he was younger and nobody could understand a word he said, I always told people he spoke his own language and I translated for him,” Sandra said. “Now his funny phrases are being immortalized on swag!”

I speak seanese

Sean is the president and chief creative officer of Seanese. He comes up with the shirt ideas, phrases and how the shirts will look. Sandra, as the chief dream facilitator, helps him give the instructions to the company’s graphic designer. Sean has final say on all designs.

Easy Peasy Lemon Squeezy

Seanese offers more than 30 different designs — with more coming — in 30 styles and sizes.

Sean’s favorite t-shirt is “Don’t Tell My Mother,” and for good reason. “What 24-year-old wants his mother to know what he’s up to,” Sandra said.

Don't Tell My Mother

Sandra handles the finances of Sean’s business, and Sean donates 10 percent of his monthly profits to non-profit organizations that have supported him. There are 12 over all, so each month one of them receives a donation. Sean is saving the rest to use as a downpayment for a condo. That may take a few years, but Sandra said it’s important for the family that Sean has a stable and secure place to live.

Sean told The Mighty, “I hope people like my shirts and hats and mugs and bags. I made them for them and it’s all from my heart. I hope people laugh and notice them. It’s my dream for everyone to wear my shirts and send me their pictures in them.”

Check out Sean’s t-shirts at Seanese.com


A mother responds to a recent CBS report on Iceland’s abortion rate and almost non existent Down syndrome population.

Read the full version of What That CBS Report on Iceland’s Abortion Rate Failed to Say About Down Syndrome.

Read the full transcript:

Down Syndrome Does Not Need to Be “Eradicated”

A recent CBS report noted few countries have “come close to eradicating down syndrome births as iceland.”

In Iceland, close to 100% of women with a prenatal diagnosis terminate the pregnancy.

What message does this send to people with Down syndrome and their families?

It implies they are not wanted.

It suggests they do not lead fulfilling lives.

It paints Down syndrome as a disease.

This is all false.

People with Down syndrome are important members of society.

They may have physical and cognitive disabilities, but they have as much value as anyone else.

Doctors deliver the diagnosis as a tragedy.

Too many parents are not given up-to-date information about Down syndrome.

Expectant moms may only know stereotypes and society’s negative disability attitudes.

We need to change this.

Let’s give parents up-to-date information.

Let’s connect them with Down syndrome organizations and other parent mentors.

Instead of trying to “eradicate” Down syndrome,

Let’s offer families support.

People with Down syndrome should not have to justify their existence.

We all share the same humanity.

People with Down syndrome belong.

Real People. Real Stories.

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