How My Son With Down Syndrome Fixed a Hotel Problem I Couldn't

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Some people might not consider a person with Down syndrome to be a good leader. But what exactly is a leader, anyway? I believe a leader is a thinker. A problem solver. A decision maker. Someone who doesn’t wait around for others to make things happen. Things happen because the leader makes them happen. Not by railroading others, or demanding or coercing. But by facing the giants.

By giants, I mean those things that seem insurmountable. What may seem impossible to some seems a matter of course to a leader. When it comes down to it, a leader sees the need, signs up for the challenge and then gathers the team to get it done. 

A leader sees the abilities in others, calls them to the task and then gets out of the way and allows them to do it. A leader inspires others — not with their elevated sense of self, but by their sense of seeing what’s possible and elevating others. A leader is fearless.

Sometimes I forget what a leader my son, Charley, is. But then I saw him in action first-hand this morning. 

Here’s what happened…

son at hotel

We’d been staying at a hotel in Louisville for three days while visiting our families. It came time to leave and I told Charley I would go sign out while he finished packing. When we arrived, the luggage cart was available. But when we went to check out, all the carts were in use.

“Great,” he said, slapping his palms to his thighs. “No carts.” (Can’t say I blamed him. I sure wasn’t carrying all our junk to the car.)

“Sorry, honey,” I said. “We’ll just have to wait ’til someone brings one back. Then we can grab it.” With that, I sat down on one of the chairs and waited. And waited, while he shifted from foot to foot.

Then he looked at me like, see ya, and headed back to the room. I figured he was going to wait there. I figured wrong. 

About three minutes later, here came Charley into the lobby carrying my hanging clothes, three bags, his swimming fins, goggles and my makeup case. Following close behind him was a tall, husky man carrying my suitcase and Charley’s backpack. Behind him was another man. He was carrying our cube of Coke Zeros, my journal, some books and a box of snacks we just had to have for our trip.

“This way,” Charley said, pointing. The men followed. Forgive me, but my mouth dropped open.  

Here was my son, maybe all of 5 feet, directing these two husky 6 feet or so men, and they headed outside. “That’s my Mom,” he said to the men, as they went by. “These are my friends, Mom.”  

The men nodded at me and said, “Hiya Mom, nice to meet you.” 

There was only one thing left to do: follow them to the car and grovel, followed by some serious apologizing.

“Did he con you into carrying our luggage?” I asked. 

“Not exactly,” one man said. “He said he needed help, so we helped.” (I could just envision Charley in the hallway of the hotel, flagging down people on their way to the lobby, saying, “Need help here” and pointing to the room where the mountain of luggage waited.) 

“Thanks guys,” Charley said, slapping them a high-five as the three of them headed back into the hotel.  

I pulled the car around to the entrance of the hotel, thinking it would be easier for Charley and me to get the rest of our stuff. 

Um, did I say Charley and me?  

Scratch that. Because the next thing I know, Charley’s emerging from the hotel with a woman following close behind, and she happened to be carrying what was left of the case of bottled waters we had brought with us. Into the back of the van it went.  

He turned and grinned at me. “See?”

Again, my chin nearly hit the ground. 

“Charley, you just can’t go asking people to do things like this,” I scolded. 

“Relax Mom, I got this.” 

He sure did. Before I knew it, the car was completely loaded, and there wasn’t a luggage cart in sight.

Now, you may think this was rude. You may think it invasive. You might even consider it demanding and inappropriate. And I suppose by most standards, it was. But I couldn’t help smiling at what a problem-solver my supposedly “challenged” son is. There I was, resigned to sit and wait until a luggage cart showed up, while he was busy taking care of the challenge at hand. Facing the giants.

A few minutes later we met my sister for breakfast. When we went to leave, Charley sat down in the waiting area while we paid the bill. He wasn’t sitting there very long when a man approached the door pushing a stroller with a small child. I saw the man and the waiting area filled with people. I also saw the only person who jumped up and raced to hold the door open. It was Charley.  

That was a moment of clarity for me. It wasn’t that Charley was trying to con those travelers at the hotel into doing work for him. He simply needed help. He had a task at hand that seemed too much for one person, and he set about gathering his team. To him, that seemed logical. And, bless him, he didn’t act like me. Not once did he issue an apology for inconveniencing them. To him, people should help people. And that’s just the way it is. 

When I think of all the leadership positions I’ve had over the years, it makes sense. Every good leader understands team work. They also understand the concept of paying it forward. (Apparently, so does Charley.) You help me, and I’ll either help you, or I’ll help someone else when the situation presents itself.  

I’m embarrassed at how often I underestimate him. How little I still know about that extra chromosome called Down syndrome. But I’m equally impressed at the things he teaches me. 

Does this mean I’ll recruit travelers to help me with my luggage when he isn’t around? Probably not. Does it mean I won’t fuss at him when he sets out recruiting his team, especially when it’s a team he’s never even met? Probably not. 

What it does mean is that I can see him in a new light — that of a person who faces his giants, whether they are people or challenges.

It also means that when he’s faced with those challenges, he’s a thinker. He finds a way.

As a mother of an adult with special needs, my whole life has been about facing the giants: 

  • The massive preconceived notions of that extra chromosome and all the challenges that come with it.
  • The extensive health issues that often accompany Down syndrome.
  • The wide schisms that so often cause those roadblocks in his social development.

Yes, life has its hurdles. But sometimes it takes an extra chromosome to show us all how to take a leap. 

When I think about it, the world may crumble around us, but the one left standing will be the one who doesn’t cower just because the situation seems bigger than he is. 

You’ll know him when you see him. Just follow the leader.

Follow this journey on Life With Charley.

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Back-to-School Ads Featuring Girl With Down Syndrome Are About More Than Selling Shoes

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The smiling face in these advertisement is so much more than a way to sell shoes.

Cora Slocum, 4, from Martinez, California, has Down syndrome and is featured in a new back-to-school ad campaign by local children’s shoe company, Livie & Luca. The company picked Cora for their advertisements after working with the nonprofit Changing The Face Of Beauty.

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Changing The Face Of Beauty is an organization founded by Katie Driscoll, a photographer and mother of six, including a daughter with Down syndrome. She decided to take action after failing to find advertisements showing kids with disabilities. Now, she’s a mom on a mission to get companies to include models with a diversity of abilities in their campaigns.

“I believe globally we’re changing the way people look at models as well as people with differences,” Driscoll told The Mighty in an email, “and that makes me so very happy.”

Screen Shot 2015-08-13 at 2.42.56 PM

“During the photo shoot, you could tell Cora was born to shine in front of the camera… Her contagious joy filled the room,” Brittany Suzuki, Livie & Luca Brand Designer, told The Mighty in an email. “We have the opportunity to change the way media portrays beauty and hope to have kids like Cora feel seen and know their abilities are limitless.”

See some photos from Cora’s shoot below:

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Photo courtesy of Livie & Luca / Priscilla Gragg
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Photo courtesy of Livie & Luca / Priscilla Gragg
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Photo courtesy of Livie & Luca / Priscilla Gragg

If by having her picture out there kind of changes people’s minds and perceptions and stereotypes, then I think that’s a good move in the right direction,” Kerri Slocum, Cora’s mother, told ABC News.

Check out the #ImGoingBackToSchoolToo hashtag to see more photos or add your voice to the conversation.

Watch the video below for more from Cora’s shoot with Livie & Luca:

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Behind the Scenes With the World's Most Famous Model With Down Syndrome

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From the moment I arrive, it’s clear this isn’t going to be a “typical” photo shoot.

In the middle of Times Square I find the model holding the client’s hand, which I assume isn’t your average client-to-the-talent relationship in the fashion industry.

When it’s time to pack up and move to the next location, the model voluntarily lugs a load of the photographic gear in a rolling suitcase behind her — she wants to help.

I wonder how many models carry their photographer’s equipment just to be helpful. Probably not many. But Madeline Stuart, or Maddy, as she’s affectionately called, isn’t your average model. She’s a world-famous professional model with Down syndrome — the first adult with Down syndrome to nab not one but seven modeling contracts, according to her mother Rosanne Stuart.

Madeline Stuart with Damian Graybelle in New York
Maddy with Damian Graybelle. Photo cred: Melissa McGlensey, The Mighty.
Madeline Stuart and Damian Graybelle pulling rolling suitcases on a New York street
Photo cred: Melissa McGlensey, The Mighty.

A year ago, Maddy, from Brisbane, Australia, was 40 pounds overweight. A commitment to dance and cheerleading helped her get healthy and discover her passion for stepping in front of the camera, which she does to help end discrimination against people with disabilities.

She exploded onto the scene several months ago when some of her photos went viral and has since amassed a huge fan base — she has more than 420,000 fans on her Facebook page and 50,000 Instagram followers.

Madeline Stuart on the EverMaya photo shoot in Times Square.
Behind the scenes on the EverMaya photo shoot in Times Square. Photo cred: Melissa McGlensey, The Mighty.
Madeline Stuart and her mom walking down New York street
Walking between locations on the EverMaya photo shoot. Photo cred: Melissa McGlensey, The Mighty.

Maddy’s had contracts with brands Manifesta and Living Dead Clothing, is the first face behind the GlossiGirl Cosmetics “Beauty Is…” campaign, will be walking the catwalk during New York Fashion Week this September for FTL Moda, had a one-of-a-kind doll made after her, and now is launching her own handbag line with a fashion company called EverMaya.

Damian Graybelle, President of EverMaya, wants it to be more than a clothing and accessory company — he’s determined to help people.

“EverMaya is all about being a brand that is socially conscious,” Graybelle tells me while we watch the makeup artists primp Maddy for the first round of shooting her handbag’s advertising campaign. “We’re really about making lives better for the people around us, especially those who start off life with a disadvantage, whatever that disadvantage may be.”

EverMaya already donates 5 percent of its profits to fund educational opportunities for the indigenous children of Guatemala, where its products are made. Now, the company will donate 5 percent of sales from the Madeline Stuart handbag line to the National Down Syndrome Society.

“We’re trying to do something different,” Graybelle says. “We want to make people feel good about the products they’re using. Having Madeline represent the brand just reinforces that good feeling.”

I’d planned to sit back and watch Maddy in action, but before long, she has me laughing, giving high-fives and taking selfies with her.

Madeline Stuart and Melissa McGlensey taking a selfie
Maddy and me snapping a selfie. Photo cred: Melissa McGlensey, The Mighty.

Like any 18-year-old internationally famous model, Maddy can have her diva moments. When we pass the Times Square M&M store and she quickly disappears inside without a word. We find her filling a bag with purple M&M’s. Graybelle buys them for her and the two hold hands while they wait in line. Then it’s back to business as usual.

Madeline Stuart inside the M&M store in Times Square
Maddy inside the Times Square M&M store. Photo cred: Melissa McGlensey, The Mighty.

The global success has been a whirlwind not just for Madeline, but also for Stuart, who’s mom, manager and public relations person all wrapped up into one. One of the hardest things she’s encountered over the past several months is the negative feedback from the online community. People have been quick to judge from afar, claiming Stuart is exploiting Maddy and forcing her into modeling for her own material gain.

“When people try and say [Maddy is] unhappy, it hurts me because my whole goal in life is to protect her and make sure she’s happy,” Stuart says. “It hurts so deeply when they accuse me of extorting her.”

After spending just moments with the two of them, it becomes abundantly clear to me that this isn’t the case.

Madeline Stuart hugging her mom, Rosanne Stuart, near Times Square
Maddy with her mom, Rosanne Stuart. Photo cred: Melissa McGlensey, The Mighty.

First of all, Stuart and her daughter are best friends. You can see it in the way they chase each other around trying to give one another playful smacks on the bum. You can see it in the way Maddy calls out “Mom!” before each photo shoot, locating her mother in the small crowd of makeup artists, photographers and clients before turning her smile to the camera. You can see it in the way Stuart responds with, “I’m right here Maddy!” and situates herself behind the camera where Maddy can focus on her.

After the first shoot, Maddy leaps into her mother’s arms where the two snuggle and kiss for a moment. Then we move on the the next location.

Madeline Stuart hugging her mom, Rosanne Stuart, near Times Square
Maddy with her mom, Rosanne Stuart. Photo cred: Melissa McGlensey, The Mighty.

It’s also abundantly clear that Maddy runs the show.

“Madeline is so stubborn,” Stuart says over the rapidly firing shutter of the photographer’s camera. “If she doesn’t want to do something, she won’t.”

Madeline on the cat walk in New York City at a recent fashion show.
Madeline on the cat walk in New York City at a recent fashion show.

At her core, Maddy’s a sweet, friendly and caring person — one who just happens to also be blazing a trail for generations of people with disabilities to come.

“The fact is Maddy just believes she can do things, and because she doesn’t understand that it’s hard to do things, she just achieves everything,” Stuart says. “She doesn’t worry about what other people think. She just believes in herself. She has no hesitation, no hang ups and she doesn’t judge anybody. She just loves and doesn’t put walls up or put people in boxes like we do.”

As we’re talking, Maddy walks in front of us through Midtown, holding hands with Graybelle and pointing out bright billboards to her mother.

“When it comes down to it, she isn’t the one with the disability,” Stuart says. “We are.”

Check out some final images photos from the shoot below:  

Madeline Stuart posing in between the V and E in a large red LOVE sign
Courtesy of EverMaya / Tammy Swales Studio
Madeline Stuart sitting on steps
Courtesy of EverMaya / Tammy Swales Studio
Madeline Stuart sitting in front of a building
Courtesy of EverMaya / Tammy Swales Studio
Madeline Stuart walking with a colorful purse
Courtesy of EverMaya / Tammy Swales Studio

“The Madeline” handbag line will launch on August 15th at NY NOW (Booth 551) and on the EverMaya website.

 

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To the Grocery Bagger Who Asked About My Daughter With Down Syndrome

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To the gentleman who bagged my groceries at Publix:

I want to say thank you for the tears I couldn’t hold back when I got home. Going shopping with my daughter Gianna is unfortunately intimidating and worrisome at times. As much as I like to believe all people are kind, there are many who are still ignorant and hurtful. I always get asked how old Gianna is, and when I say her age, I get an awkward moment of silence or a comment about her size: “Oh wow, she is too tiny.” The next question is usually, “Is she running around everywhere?” My reply is, “Nope, not yet.” Then another awkward moment of silence.

Many times I should use these moments as a chance to educate someone on what life with Down syndrome is all about. How she had open heart surgery at 4 months old and had trouble with gaining weight because of her condition and the time it took to recover. How individuals with Down syndrome might have a shorter stature. I want to express to them how hard she works to keep up and hit milestones as she grows. How she is more alike than different and I am OK with that, and they should be, too. Everyone is fighting their own battles, so stop passing judgment.

Today you didn’t do any of those things. You looked at her and smiled. You asked me how old she was and when I said almost 2, you said, “Wow she’s almost 2 years old, look how far she has come!” You gave her a balloon and I asked Gianna to say thank you by doing sign language. It took her a second, but she did it. I hate to admit my knowledge of sign language is limited because I only focus on signs she’s able to do. Boy if I knew what you signed to her while in the store today, I would have fallen to my knees in tears. When I got home, I texted a picture of what you signed to a friend and she replied, “That means, ‘I love you.”

Thank you for accepting my daughter for who she is. I only wish for a life filled with love, happiness and joy for her regardless of the things she can or cannot do. You proved to me today that she will have a bright future because there are still good people in this world and more importantly, right here in her community. I wish I could’ve given you a hug and said all this to you face-to-face today. Your kindness and sweet gesture meant more than you can imagine. Thank you.

I shared this letter on a local Publix supermarket’s Facebook page in April 2015, and the response was absolutely astonishing. The employee, Bob, was honored by his fellow staff, managers and even district managers. He was made employee of the month and is now a friend of mine. There is so much good in the world, and this particular event made a lot of people remember that.

Publix collage

A version of this post originally appeared on Publix’s Facebook page. Follow this journey on Facebook at Peace, Love, Gianna.


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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This 25-Year-Old With Down Syndrome Just Published His First Book

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Marcus Sikora has a flare for the creative.

The 25-year-old from Omaha, Nebraska, has acted in school productions and wrote and produced a one-act stage performance in cooperation with a local high school.

Sikora also has Down syndrome, but that hasn’t stopped him from achieving something that would be impressive for any 25-year-old. As of June 2015, he can add “published author” to his list of accomplishments.

author sitting in library

Sikora’s first book, “Black Day: The Monster Rock Band,” is an illustrated 40-page children’s book. It tells the story of Brad, a paperboy who dreams of becoming a rock star. When Brad discovers the band “Black Day” — comprised entirely of monsters — rehearsing in an old garage, he approaches them and asks if he can become their new bass player. The monsters’ response is swift: “No humans!” So Brad sets out to change their minds. However, he realizes the “Black Day” bandmates have much bigger concerns on their minds.

Black Day: The Monster Rock Band book cover

“[Marcus] is an incredible storyteller with an imagination to be envied,” his mom Mardra Sikora told The Mighty in an email. She and her son worked on “Black Day” together with Marcus Sikora dictating the story as his mom transcribed it.

“Sometimes I’d ask ‘What’s next?’ or ‘Why?’ and Marcus would answer, ‘Stuck,'” Mardra Sikora told The Mighty. “‘All right,’ I’d say, ‘We’ll come back to that.’ Then the next week, we’d pick it up again.”

Author and children asking for autographs

An animated short version of the book, which Marcus Sikora wrote, directed and voices for one of the characters, will be released on DVD around October 1 (trailer below). A “Black Day” music video is also in the works. In the meantime, Sikora is already contemplating the book’s sequel.

Watch the trailer for the animated short and take a look at some of the book’s illustrations below.

Black Day comic

Black Day comic

“Black Day: The Monster Rock Band” is available for purchase here, through Amazon or through Mardra Sikora’s website. You can also keep up with Marcus and Mardra Sikora via Facebook and Twitter.

All photos courtesy of Mardra Sikora.

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Why I Want People to Keep Staring at My Child With Down Syndrome

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The restaurant was buzzing with customers and conversation. Our family of six was tightly packed into a booth made for four, and I was trying my best to keep my kids, Beau and Bitty, happy by making tiny towers out of jelly packs we had found on the table. One, two, three, four … crash. The jelly tower fell over and a roar of laughter erupted at our booth. “Do it again, Mama” Beau insisted. How could I resist? Ten towers, five nursery rhymes and 30 rounds of peek-a-boo later, our waitress finally arrived to take our order.

“Cheese-ba-gurger, smiley fries and ketchup, please,” Beau confidently stated. More laughter and lots of high-fives. We all love the way Beau says “cheeseburger” and, more importantly, we love watching him exercise his independence. 

But we’re not the only ones who love watching him.

In this crowded, chaotic moment, I feel the stillness of stares and it makes me smile.

Amy Wright the mighty.3-001

As parents, we’ve all experienced those moments in public when our children’s sub-par behavior becomes the focus of undesired attention. The moments that test us, try us and leave us feeling beyond embarrassed. And then there are the great moments; the moments when our children are at their best, and we wish everyone would stop to notice.

As the parents of two children with Down syndrome, we’ve discovered these moments — the moments when people can’t help but stop and stare — are always happening. The grocery store, park, mall, beach — we feel the stares and learned to embrace them. With each stare, we feel more hopeful the world is learning to value our children, and with that comes an organic realization that we all deserve to be accepted and included.

For us, the stares are an opportunity to educate others by showing them the great potential people with Down syndrome have. And perhaps more importantly, it helps give others a glimpse at the wonderful blessings we call our children.

The waitress delivers Beau’s “cheese-ba-gurger,” and he gives her an enthusiastic “thank you.” Bitty swipes a fry and reminds us all to bow our heads before she takes a bite. I look up and see the couple sitting at the table next to us has ceased their conversation and has become fixated on the action happening at our table. We exchange smiles. Please keep staring at my child.

Follow this journey on It Starts With a Voice.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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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