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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What My Son With Down Syndrome Saw That Turned My Anger to Awe

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It’s 9 o’clock. My husband’s away and I’m doing bedtime solo. The twins are in bed and Grethe’s door is closed. In the chaos of getting two 7-year-olds quiet, I have lost my 15-year-old. This is my boy with Down syndrome, and he likes to run on his own schedule. That’s not how things work in our house, however, and tonight I’m in no mood to play games.

He’s not upstairs. I call downstairs and get no answer. I feel a tinge of anger in my chest. I’m ready to be done for the day. I step out onto the front porch and stare into the darkness of the adjacent school playground, which is Kelly’s default location. I call his name into the night and listen.

“Alone!” is his exasperated reply.

Well, you know what, buddy, I’m not happy, either. We live in a neighborhood so I try not to shriek back. I calmly and sternly inform him to “Get. Back. In. The. House.”

The order is met with silence — a deeply frustrating silence.

I take a breath. My anger is now in my throat and is starting to feel like rage. I envision running onto that playground and dragging him home. But he weighs a solid 125 pounds so force doesn’t work so well these days.

I decide to get myself ready for bed to calm down. I call out very reasonably into the abyss, “Come home now, please!” and I head upstairs.

I brush my teeth and start to massage my face and neck with my nighttime essential oils. I relax a bit, but then through the bathroom window that faces the school, I hear the unmistakable sound of tires on gravel. There’s a car in the parking lot. As I rinse my face, my tired mind starts to wander. Is Kelly still over there? Who’s driving through the school lot on a dark Friday night? We live in a safe neighborhood but still.

Now I feel a different emotion rising: fear.

I finish as quickly as I can and rush back onto the porch. “Kelly!” I scream.

Nothing.

Nora Rozell the mighty.2-001

I don’t really think anything bad has happened, but I don’t know that it hasn’t either. I don’t want fear to take the lead, so l let the anger rise again.

“Kel-ly!”

More silence.

I’m getting really worked up now. But then I hear a far-off noise. A voice talking. It’s coming from over the cedar panel fence in my own backyard.

“Aargh!” I bellow as I head that way.

As his silhouette comes into view, I see he’s frantically waving me toward him. One last, “Kelly, get inside right now,” spills forth, but he just grabs my hand and says, “Shhh!”

He throws his arms out and gestures grandly to the darkness all around. “Fireflies,” he says in a whisper. “Fireflies,” he says again, in a voice that implies, “Don’t you see?”

My blind rage lifts long enough for me to look around. Sure enough, the trees and bushes are putting on a show. Lightning bugs blink and float all about in the soft summer air. The beauty of it in contrast to my anger is like a sudden slap and my eyes sting with tears.

Kelly sits cross-legged on the damp grass and stares in wonder at the show before us. I drop to my knees next to him and lean into his sturdy frame. My tears flow openly now, my demons have left me spent. While I was wasting time with rage, Kelly was sitting in awe.

As we watch this gift of nature together, I drink the sweet, night air deep into my lungs and find my way to calm. We sit in silence until we have had our fill.

Finally, Kelly gets up and reaches his hand down to help me to my feet. “Time for bed,” he says as he pulls me toward the house.

I follow his lead once more.

Follow this journey on NoraRozell.com.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? 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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Why I No Longer Worry About the Future of My Daughter With Down Syndrome

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I don’t know when it happened, but it happened. I went from worrying about my daughter’s future to wondering about it.

When Willow has born, Down syndrome was foreign to me. I had no idea how her extra chromosome would affect our lives. The hospital gave me a book, but that just added to the mystery. It also fueled fear. The book’s pages were full of possibilities but no certainties. There were pictures, percentages and plenty of stories but no guarantees. And that, my friends, is scary.

For the first several months of Willow’s life, worry was my constant companion. That’s because Down syndrome wasn’t the only diagnosis I was digesting. Willow was also born with several heart defects. The idea that my youngest daughter had holes in her heart was enough to rip a hole in mine. I grew anxious every time she hiccuped. I held my breath every time she cried. Weekly weight checks made me question if she’d make it to surgery. Her limp body was an ever-present reminder of not only low muscle tone but a weak heart. Hers and mine.

Willow eventually did make it to surgery. It turned into an emergency situation at just one month of age. I believe by God’s grace, she survived. But, unfortunately, so did some of the worry. Not so much regarding her heart but other things. And boy, were there other things. In the first 15 months of Willow’s life, she faced torticollis, failed hearing tests, skin infections, a leukemia scare, a bone marrow draw, emergency hernia surgery and another unexpected diagnosis of chronic benign neutropenia. The list of things to worry about was never ending. It still is. But somewhere between then and now, the worry waned.

Maybe I’ve grown numb, but I’d rather think of it as answered prayer. That’s because ever since Willow was born, I’ve been telling God I’m giving it all to Him. I’m giving Him my worry, my fear and my hopes. And somewhere along the way, I believe he took them. I have no idea when, but I’m convinced that He did, because this week, I caught myself dreaming. And then it hit me.

Instead of worrying about when Willow will walk, I now wonder when I’ll be able to sign her up for dance class. Will she be into ballet or jazz? No, I bet she’ll be a hip-hop girl.

Instead of worrying whether Willow’s heart will require a second surgery, I now wonder how I can make my heart more like hers. Her love is pure and undiscriminating, the kind I read about in the Bible.

Instead of worrying about how her chronic neutropenia might interrupt life, I now wonder how best to live ours. There are so many things I want Willow to experience.

Instead of worrying about leukemia, sleep apnea, cataracts or all the other risks associated with Down syndrome, I now wonder what risks Willow will take as she grows older. I’m finding out there are so many worth taking. So many.

I’ve wasted countless moments worrying about the list of things that could happen to Willow. I’ve even caught myself anticipating problems. But you know what? It didn’t change a thing. Scary things happen. Me worrying about them or anticipating them only makes them scarier. What’s worse? It sets a horrible example for my kids, especially Willow.

After all, I want this girl to live, to love and not worry about the waves but ride them.

Jennifer Hines the mighty.1-001

Follow this journey on The Mighty Willow.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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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When My Doctor Said the Most Powerful Thing After My Son's Down Syndrome Diagnosis

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With my son Benny turning 2 years old next month (eek), I’m doing a lot of reflecting. I’ve made so many friends, all of whom are on this beautiful journey with me and have little ones with a little extra. Inevitably, when you first get to talking with someone who also has a child with Down syndrome, the question, “How did you find out?” always comes up.  

I’ve heard the most upsetting horror stories that make me sick to my stomach. Can you imagine the first thing your doctor tells you after finding out your child has Down syndrome being, “The life expectancy isn’t great for them”?  

I’ve heard so much lack of compassion on the part of the many medical “professionals” that were there during the delicate time my friends were finding out about that one extra chromosome. Stories of nurses giving attitude about it, doctor’s referring to the child as “it” and parents being pushed toward termination time and time again.  

“You don’t have to be a hero, you know.”

“We will need an amnio ASAP in order to do the abortion this late, but don’t worry, we can still do it.”

“You want to keep it? Why?”

“You do realize the quality of life you are looking at for the child and for yourself, right?”

These are some of the statements that my now dearest friends heard shortly after the diagnosis was given or suspected. These statements are horrifying, poorly-timed to say the least and also all secondhand for me.

This is not the experience I had.

I love my OB. She’s hands down the best gift I could’ve asked for during my pregnancy with Benny. I had no idea about it at the time, but now I know and couldn’t be more grateful for everything this woman did and said to me.

When Dr. Mazey first told me Benjamin did indeed have Down syndrome, the situation was slightly tense. This was the only time during my entire time with her that she was slightly emotionless. She quickly rattled off my options and next-step scenarios. She was looking slightly off to the side and being matter-of-fact about it, even though she was squeezing my hand the entire time. She was professional and to-the-point in the least judgmental way possible. I can tell, especially now with hindsight, she wanted to make sure she didn’t persuade me one way or the other, and I have nothing but respect for her for that. She did her job brilliantly. She used a lot of “if you decide…” statements to make sure I knew nothing was set in stone. She did exactly what her oath would expect her to do.  

I told her termination was not an option for me.

Then she said the most powerful statement I could’ve heard at that moment. She looked me in the eyes and said, “This is your baby in there. He is still your baby. This changes nothing.”  

Through the rest of my pregnancy, Dr. Mazey gave me the most unbelievable support an OB could give. She held my hands when we had to talk about some things that may be difficult, she hugged me the few times I broke down in her office and she made sure to explain every single bit of information to me in a way that informed me without scare me. She called me occasionally to see how I was doing, and she called me out on my bullsh*t smiles I used to try to keep on my face when we talked about the potential health problems Ben might have.  

By the way, once we told her Benjamin would indeed be Benjamin, she never referred to him by anything but his name.  

Unfortunately, Dr. Mazey was out the day I delivered Ben, but her partner, Dr. Gilbert, is just as amazing as her and walked me through the delivery like the champ she is. The next day, Dr. Mazey came to visit us. She walked into my hospital room and snatched that baby up with as much love and excitement as anyone could possibly have. She genuinely smiled at him, and at me, and gushed over how beautiful he was. 

I’m so thankful for the experience I had. Dr. Mazey and the entire staff at St. John Hospital in Detroit were prepared and perfect. They all fell in love with my son and couldn’t have cared less about his diagnosis. They cared for my Benjamin and not for “that Down syndrome baby in room 301.”

Thank you. Thank you. Thank you.

To all of you who weren’t as lucky as I was, I wish I could change the past for you.

But what I can do is attempt to change the future. What I can do is everything in my power to hope those of you out there who have a diagnosis in your future and don’t have the luxury of a Dr. Mazey can find hope and love in the words of myself and my friends as you begin your journey. Please visit “The Down Syndrome Diary” page on my blog to learn more about how we’re trying to help.

Follow this journey on Ben Through It All.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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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This Accessible Hotel Is Staffed by People With Disabilities

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In the Italian city of Asti is a hotel staffed by people with disabilities. It’s called Albergo Etico. In English, it means “Hotel Ethics.”

The employee pose on a patio outside the hotel.

Hotel Ethics began in 2009 as a restaurant internship for a boy with Down syndrome, according to a Google translation of the hotel’s website. It quickly blossomed into a hotel and restaurant that helps teach its employees independence.

The staff gain career training and learn crucial independent living skills during a three-year training program, where they live with their coworkers on the hotel property. The program fosters autonomy by teaching the staff to live with their peers and rely on each other rather than their families. A mentoring system gives newcomers a chance to work with the more experienced staff members.

Staff members serve in all kinds of positions including waiters, receptionists, sommeliers and tour guides, according to the website West, a European news website.

When we present our project, in Italy and in the world, the first thing we say is, ‘Hotel Ethics is not voluntary, not handouts but a business project,’” Antonio De Benedetto, President of Hotel Ethics and Andrea Cerrato, Secretary of Hotel Ethics, told Free Moving, an Italian blog about disability. “We know that everyone has to make their own path and that the results can be totally different from each other, but at the same time we are aware that people with disabilities are a resource and not a cost.”

Appropriately, the hotel also makes accommodations for guests with special needs, including accessible parking and help with transfers involving wheelchairs or strollers. Tactile maps of the hotel are available for the visually impaired.

Check out some photos of Hotel Ethics below: 

Group photo of the staff, they're all wearing orange uniforms.

The staff have pose with their hands up in the hotel theater.

The staff poses behind the bar.

One employee has his hand around the other. They're both wearing orange uniforms.

A woman who works at the hotel leans her head on another employee's shoulder.

The employees stand in the hotel, smiling with orange uniforms.

A employee of hotel serves a couple food in a dining room with brick walls.

Group photo of the employees outside the hotel wearing orange uniforms.

Hotel Ethics is tackling the problem of unemployment in the disability community at a time when services like these are sorely needed in all parts of the world. As of June 2015, the unemployment rate for people with disabilities in the United States is just over 9 percent. That’s nearly double the unemployment rate for people without disabilities, according to the U.S. Department of Labor.

If you or a loved one has a disability and is looking for tips on finding employment, check out this infographic. For more information on visiting Hotel Ethics, visit this website

Related: 7 Tips for People With Special Needs Looking for a Job

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