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Why We Have Such Great Expectations for Our Son With Down Syndrome

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When you bring a child with Down syndrome into the world, I believe you are instantly equipped with an amazing ability. You’re suddenly aware of a global underground fitness craze you never knew existed. And it’s everywhere — hospitals, doctors’ offices, schools, playgrounds, theme parks, the grocery store, you name it.

It’s called Jumping to Conclusions.

It seems everyone but you and a select few clued-up people are doing it. And it makes you redden and sweat buckets although you don’t practice it. It makes your heart palpitate and the veins in your temples throb in anger and frustration, wondering what child they’re talking about because all that jumping and concluding does not apply to yours.

When you have a child with Down syndrome, you will learn volumes about accepting difference, and still more about how every child really does develop at his own pace, his own journey drawn by him and no one else. And he chases it. By God, he chases it with his arms trying to embrace the sun, the wind blowing his cheeks red, his feet tumbling over one another at whatever pace is called his own. He chases it with all he is because it is in him. Because he is being raised to understand that if he wants it, if he works for it, it is his. Just like everyone else. He knows he can achieve, and he knows we believe in him and will not let the detractors drag him down. He knows we entirely have his back.

He knows.

Yet they try to break him, saying no, no. Not you. You aren’t. You can’t. You won’t.

Still all the negativity and erroneous conclusions in the world will not stop him, because he is. He can. He will.

Do not dare persist in underestimating him.

Despite what the Jumpers want to believe, the signposts of goals and achievements for everyone in this life do not match one another. They are not equidistant, and they are all too often not even pointing in the same direction. All human roads bend and loop and sometimes wrap clean around themselves before coming out the other end. Sometimes they come to a dead stop and start back up again. Sometimes the paths meet up along the journey, hinting at similarity, the whisper of a reflection gone as quickly as a raindrop dissipates pond water into concentric ripples.

He will rise and the Jumpers will fall. Their conclusions inaccurate, their assumptions flawed, flimsy, lazy. Their expectations of him miniscule. Sometimes nonexistent. Given with barely a breath. 

“But he has a learning disability,” they say. “We don’t expect him to go far.” 

And you reply no. Maybe he’ll go work in a theater company, or perform in a symphony or work in IT. He will go as far as he works to go. The only conclusion you are allowed to reach is that he is the master of his own fate. You and your statistics are not in charge of him.

Here on the cusp of age 4, we expect so much more of our son than does everyone else because we have seen his intellect and his drive and his passion deliver his progress. We have witnessed him think and process and experiment. Great human beings deserve great expectations. We would not dare cheat him with less.

And so our goals for our son are simple: soar. Find your joy and embrace it. Find your passion and deliver it. Find your road and own it. In your time, in your way.

Own it.

We follow his lead. We watch this clever little boy who is taking a little bit longer to stop and smell the roses on his journey. Every day he is fulfilling his unique purpose — a singular and boundless opportunity to be magnificent. Just like everyone else. One day he will look back from his place far ahead in this life and may indeed feel pity upon those who once pitied him. Pity the small-mindedness.

Dare I say I would cheer.

They can jump clear into the sky and conclude ’til they run out of guesses. We expect our son to blow their minds and we know he will — we’ve already seen it. Perhaps they should stop jumping now, take a seat, stop concluding and pay attention.

It’ll be a wonderful sight to behold.

little boy smiling

Follow this journey on Down in Front, Please.


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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Madeline Stuart Rocks 6 High-Fashion Disney Princess Looks in Viral Video

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Madeline Stuart has done it again.

The world-famous model with Down syndrome is in the habit of stunning us all. This time she’s the star of a BuzzFeed video where she rocks six different Disney-inspired looks, complete with hair, make up and outfit.

Stuart looks gorgeous in everything from Rapunzel’s braid to Mulan-style bangs.

Check out Stuart’s Disney-inspired looks in the video below: 

Stuart can now add being a BuzzFeed video star to her long list of accomplishments that includes contracts with brands Manifesta and Living Dead Clothing, being the face behind the GlossiGirl Cosmetics “Beauty Is…” campaign, owning the catwalk during New York Fashion Week, having a one-of-a-kind doll made after her and launching a handbag line.

She doesn’t worry about what other people think. She just believes in herself,” Stuart’s mother, Rosanne Stuart, told The Mighty in August. “She has no hesitation, no hang ups and she doesn’t judge anybody.”

The release of the video comes on the heels of Stuart’s announcement last week that she’ll once again be returning to the runway for New York Fashion Week on Feb. 15. We can’t wait to see all that she has in store for us.

To keep up with Stuart on her many adventures, follow her on Facebook, Twitter or Instagram.


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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Reality TV Star Sued By Family of Girl With Down Syndrome From Viral Meme

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A reality TV star is being sued after sharing an offensive meme featuring a girl with Down syndrome.

Valentin Chmerkovskiy, a dancer on the reality show “Dancing With the Stars,” came under fire earlier this month after posting a meme, which has since been removed, on his public Facebook page. The meme read, “Letting your kid become obese should be considered child abuse,” and it showed a picture of a child who turns out to have Down syndrome.

offensive meme featuring a girl with Down syndrome

Her name is Skylar and she’s from Robertson County, Tennessee, WKRN reported. She is now 16 but was much younger at the time the photo was taken, maybe nine or 10 years old.

She and her family are suing for defamation, emotional distress and invasion of privacy, seeking $6 million from Chmerkovskiy, $600k from the person who took the photo and $6 million from CBS, who also shared the photo, according to TMZ. They say that the photo, which was made into a meme with the caption “Everything wrong with America” in 2014, resurfaced and went viral when Chmerkovskiy shared it, which was devastating to the family.

  The family’s ordeal began after her Skylar’s sister, Harley Eden, saw it online earlier this month and realized it was Skyler, WKRN News reported. “I couldn’t believe it when I saw it,” Harley Eden, Skyler’s sister, told the outlet. “[It]makes me wonder what kind of people are out there. It makes me sick.” Chmerkovskiy’s didn’t mention Down syndrome at all in his post. His caption read:
I am truly sorry for the lack of sensitivity… but on some level I have to agree. Raising a child is the hardest thing in the world, I know, but being negligent when it comes to their nutrition is a crime. The lifelong obstacles and health issues you place on your child because of it can be devastating moving forward in their life. You’re handicapping your kid, and they’re defenseless, they don’t know better, that’s why you’re there… anyway I’m just a childless preacher, but here’s some food for thought. #‎nopunintended
The Facebook post garnered hundreds of likes and shares but has later removed. Chmerkovskiy later apologized for the offense on Facebook, but then continued to defend his position and speak about childhood obesity on his social media. “I am truly sorry for the lack of sensitivity … but on some level I have to agree,” Chmerkovskiy wrote, going on to explain how he thought some parents were “handicapping” their kids by allowing them to become obese, the New York Daily News reported. Skylar’s mother told WKRN News her daughter has battled with her weight since the age of four and now attends a weight management clinic at Vanderbilt University Medical Center. Adults with Down syndrome are more likely to be obese than those without the condition, according to the National Down Syndrome Society. It’s often the result of untreated hypothyroidism, a condition in which the thyroid gland doesn’t produce enough thyroid hormone. Get more on the story from the video below:

The Mighty reached out to Chmerkovskiy for comment but are yet to hear back. 

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When a Learning Center Said They Weren’t ‘Equipped for Down Syndrome’

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I’m currently educating my daughter Zoey at home, and recently I called a learning center that offers enrichment classes for homeschoolers. I was told there were spaces available. I was so excited, as this place is usually full. I decided to ask if they accept children with special needs, and it all went downhill from there.

You see, my daughter has Down syndrome. Two words, a diagnosis, that means she has an extra copy of chromosome 21. Along with that extra chromosome comes some challenges that the rest of us may not experience. Each person with Down syndrome is unique, just like the rest of us. It’s not possible to know how a child behaves or what challenges they face strictly by the fact that they have Down syndrome. So you can imagine how I felt when this establishment said, “We aren’t equipped for Down syndrome.”

little girl wearing glasses

“We aren’t equipped.” The words continue to replay in my mind, and now I have questions I was too shocked to think of in that moment. But at this point, the questions don’t matter. What matters is that we live in a world where people still hear a diagnosis and stop. That’s the end. They have a picture in their mind and are unable, or unwilling, to take a moment to learn. How can anyone know they aren’t equipped without knowing what is needed? I believe every child should be given a chance.

girl holding blue umbrella

My daughter is amazing! Of course, I’m her mom and may be biased just a bit, but anyone who has taken the time to know her says the same. She loves “Frozen,” she loves to dance and sing and she spends tons of time coloring and playing with her dolls. She adores her siblings, loves us (her parents) and is constantly talking about her friends. She has the power to light up a room and a smile that beams, accentuating her hazel eyes and sweet little face.

Yes, Zoey has Down syndrome and she does face some challenges, but should that mean she has to miss out? I don’t think so. I believe she, and all children, deserve a chance. A chance to learn and have fun, a chance to meet new friends and teachers, and especially a chance to be known and seen for who they are.

young girl raising her arms

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. 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 Submit a 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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To the People Who Say 'Sorry' When I Tell Them My Child Has Down Syndrome

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Sometimes when I tell people my son has Down syndrome, they reply by saying they’re sorry. The next time you’re tempted to tell someone who has a child with special needs that “You’re sorry”  don’t.

It may come from a place of caring. It may be well-intended. But what you just said is that you’re sorry my son is the way he is. And I’m not sorry at all.

He is exactly who he is supposed to be.

I’m not sorry he was born, I’m not sorry he is a part of our family, I’m not sorry Down syndrome has helped shape him into the most beautiful and loving little boy possible, even if the rest of the world might not fully appreciate or understand.

But I appreciate his perfection. I understand how beautiful he is. And I am grateful every day that I have the honor and privilege of being his mother.

I live daily in the company of an angel. So please. Don’t ever be sorry.

Follow this journey on A Simply Perfect Life.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental 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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Toddler With Down Syndrome Reaches an Adorable Milestone on Video

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A video of a sweet little boy with Down syndrome reciting the alphabet is going viral.

Pam Gables Sapp, of Helena, Alabama, shared the video of her grandson, John David, 2, on Facebook on January 24. Since then, it has racked up more than 12 million views and been shared more than 288,000 times.

In the video, the toddler goes through the alphabet repeating each letter clearly after it is said to him.

Best ABC’s I ever heard! Wait for the W ???The Bell Center for Early Intervention Programs

Posted by Pam Gables Sapp on Sunday, January 24, 2016

 

John David’s mother, Hannah Marlin, 23, has been taking her son to early intervention and speech programs since he was 6 months old to help him achieve his learning goals, she told ABC News.

Marlin and her son have been working together on the Alphabet song for weeks, but on January 24 was the first time she and her mother, Sapp, heard him do it so clearly.

It’s definitely something that could give you hope,” Marlin told the outlet. “On the parents’ part, just know to keep persevering and don’t give up. They’ll reach their milestones when they’re ready.”

This was quite the accomplishment for John David, who can say single words but doesn’t speak in full sentences yet, people reported. Marlin says people from all over the country have been reaching out to her to thank her for the video, and even told her they’re using it to help teach their own children the ABC’s.

 

 

 

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