What the Movie 'The Ataxian' Means to Me as a Special Needs Mom

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Chances are, if you’re reading this, life possibly threw you a curveball. The path you are traveling is not what you expected or imagined, but you’re doing all you can to stay afloat and find strength, hope and camaraderie from anyone doing the same. 

This is why The Mighty is so fantastic. As the mother of a daughter with special needs, I appreciate beyond measure its stories of everyday triumphs and real life experiences. They tell us we’re not alone on this journey and encourage us to keep going – to put one foot in front of the other.

This was Kyle Bryant’s mantra when he first learned he had Friedrich’s ataxia (FA), a progressive, degenerative neuromuscular disease. Actually, it was not the minute he was diagnosed. Like the rest of us, he went through a period of grieving for the life he would not live. And then one day he decided to live the life he could – and inspire as many others as he can to do the same.

I first learned about Kyle through close friends whose young daughter was recently diagnosed with FA. In June 2015, The Ataxian, a documentary about Kyle and those who love him premiered at The Dances with Films Festival in Los Angeles to critical acclaim. 

Watching this film is no walk in the park. A Disney movie it’s not. A cure has yet to be found – and it’s gut-wrenching to see what this disease does to the body of those diagnosed, as well as to the mind and spirit of their loved ones. At several points in the beginning, I wanted to walk away. But at the same time, it’s amazing to see how some people respond when handed what others might consider a life defined by challenge.

Kyle Bryant is simply not a sad guy. Brimming with hope, courage and conviction, he will not be deterred by the fact that his muscles are failing him. Instead, he uses everything he has to fight and to compete in the Race Across America: “The most grueling bike race in the world,” to raise awareness and support for FA.

The movie follows Kyle and his teammates on this journey interspersing breathtaking footage of America’s mountains and heartland with deeply personal interviews of participants and parents. One of the first voices the audience hears is that of Kyle’s mom, who relays every mother’s instinctual wish: “I just want to make life easier for him.” 

I know how she feels. My daughter was diagnosed with a chromosomal abnormality when she was 22 months old. A brief phone call erased any of the typical visions I had for her. Cognitively, she would never develop beyond the age of 5 or 6. Like Kyle’s mom, I want to make life easier for her.

As I felt at the beginning of this movie, in the beginning I wanted to hit the pause button. I didn’t want to learn about all the diagnosis would entail. But then you realize you’re in the race whether you initially wanted to be or not.  Maybe you didn’t sign up for it – but you’re registered nonetheless. So one mile goes by after another and you put your head down and focus on doing everything you can to make your child’s life better. You enlist professionals and visit therapists, you research and read everything you can, you attend conferences and lectures and some days, it’s all you can do to sit down in a church or on a park bench and pray.

And slowly you realize there’s no more you can do than what you are doing. Then you look up and see you’re surrounded by a team that supports and loves you and will do everything they can to see you through – and somehow you all manage to laugh and to hug and to celebrate. That part of the movie is fantastic to watch. That part I never want to end.

“The Ataxian” is not a Disney movie, but to me, it’s a film by, for and about the Mighty among us who do everything they can to put one foot in front of the other and in doing so remind us, whatever course we travel, to do the same.

Check out the movie’s website for more information.

Lead photo source: “The Ataxian” press kit

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The Artist Behind the Painting J.K. Rowling Just Called Out on Twitter

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Henry Fraser is an artist and inspirational speaker living in the U.K. When he was 17 years old, he went on a vacation with some friends in Portugal and took an ill-fated dive into the sea, damaging his spinal cord, according to his website. The injury rendered him unable to move his arms or legs.

My new life began that day,” he wrote on his website.

Determined to do something good with his situation, Fraser, now 24, shares his experience of becoming a quadriplegic with others in what he calls his “Pushing Myself” talk. Another of his talents? Painting — with his mouth. By attaching a paintbrush to a longer tool, which he controls with his mouth, Fraser creates impressively detailed pieces he calls “mouth paintings.” Many of his works feature athletes or people in action scenes.

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Photo from Henry Fraser’s Instagram
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Fraser’s first mouth drawing from his Instagram

His latest mouth painting was good enough to catch some pretty notable attention. On July 7, Fraser tweeted a photo of his painting of Harry Potter.

A few days later, J.K. Rowling herself tweeted her approval.

To keep up with Fraser and view more of his artwork, visit his Facebook, Twitter and Instagram pages.

h/t BuzzFeed

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What My Child With Special Needs and Her Cousin Teach Me About Acceptance

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We arrived at the hospital at 6 a.m. for surgery. My daughter was having tubes placed in her ears. Though a routine procedure, I was still nervous. I hate the idea of general anesthesia anywhere near my daughter.

The pre-op nurse, Mary, walked in to ask the typical pre-surgical questions. She had a pleasant face and her hair and scrubs were meticulous. She looked like the type of friendly, calming nurse you’d want to see before a procedure. She started to ask regular questions at first, the need-to-know kind. What type of medication does my daughter take and what milligram? Then Mary decided to go beyond the necessary questions.

“Your daughter doesn’t eat anything? Is that normal for her condition? Well, does she walk? Does she talk? She doesn’t sit? Was she breech or something? You’re going to have a run for your money since your daughter is special.”

As an adult and a registered nurse, her words not only devastated me, but her ignorance and naivety utterly shocked me. How did she not know as a nurse that cerebral palsy is an umbrella term and affects all children and adults differently?

If I wasn’t in such a state of shock and devastation from her words, I would’ve told her about what it means to show compassion and acceptance — specifically, the acceptance my family has learned by watching my daughter, Estella, with her cousin, Trent.

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While in labor with my daughter, she stopped breathing. I was brought to the OR for a crash C-section. She came into this world and was resuscitated after 17 minutes. The NICU critical care team came to the hospital I delivered at to pick her up and start a high-tech cooling process to try to prevent any further brain damage she sustained due to her lack of oxygen. Estella was in grave condition and on a ventilator. I felt like my heart had stopped beating when hers did.

My sisters traveled immediately to the hospital. One flew in from California with her 3-month-old son, Trent, while my other sister, pregnant with her second child, drove up from Philadelphia to be with me for moral support.

Our daughter was diagnosed with brain damage called Hypoxic Ischemic Encephalopathy, or HIE. The injury caused damage to her basal ganglia and thalamus, which control cognition, fine and gross motor systems of the brain and voluntary movement. She has hypotonic cerebral palsy.

Thankfully, my younger sister never went back to California and now lives close to us. Every weekend, I bring my daughter to play with her cousin, Trent.

I never understood the full innocence of children until I started seeing Trent play with Estella. Trent just turned 2 and Estella is now 22 months. The day they first met, my sister and I laid the two next to each other. Immediately, Estella reached out and held Trent’s hand. When Estella and Trent see each other, the excitement on both of their faces melts my heart.

He insists on pushing her in her stroller. He brings Estella her shoes because he knows that means we’ll put her in her gait trainer. Then the two run around together — that is, as long as he isn’t assisting her by pushing her in it. Sometimes Trent grabs his toy car and sits on it and tries to race her. Because of him, Estella has learned to run in her walker.

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He tries to share his food with her because he has seen myself and my family constantly work with her on eating purée even though she has an oral aversion. He knows she has something special on her stomach (a g-tube). He tries to give her his juice, although she only likes to drink her Pediasure.

Trent hugs and kisses Estella and plays with her hair. He’s so gentle with her. If one is crying, the other one comforts him or her with hugs. He loves his “Stayduh.”

You see, by watching these two play and the general acceptance Trent shows, no words can describe the happiness I feel. I’m so proud of my sister for raising such a nice little boy. I’m so thankful for the relationship Estella has with her cousin. He’s helped her blossom by leading by example. It gives me hope for future friendships in Estella’s life.

As a parent and as a person, I believe it starts with us. It starts with what we teach our kids about differences and acceptance of those with disabilities.

I hope someday soon disability won’t be looked at as a stigma. Estella is the love of my life and my purpose. I look at her in amazement at what I helped create. She is the happiest child. We are so beyond lucky to have her.

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When I Trusted My Gut During My School Search for My Son With Down Syndrome

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Our journey in search of an appropriate preschool for Carter started about six months before his third birthday. We had our first meeting with the Department of Education, and it was officially decided he would stay in early intervention until the following September, but it was clear I needed to get my search underway.

I was cautioned not to get my hopes up for an integrated setting. I was told it’s better to keep “them” in a self-contained setting for preschool and then maybe “they” can be integrated in kindergarten.

I started with a list of 13 schools, but only five offered an integrated setting. We did tours, playdates and filled out pages and pages of applications. I created a book that included all of his evaluations, little anecdotes about his likes and dislikes and blurbs about our family, which offered a peek into our lives. Even with all of this prep work, it was clear early on that most of these schools already had a bias towards putting children with Down syndrome in the most restrictive setting.

I became increasingly upset about the limitations being placed on my son, sight unseen, by a group of “professionals.” Discouraged, I continued my search, delving further into the schools that only offered self-contained classrooms. I felt in my heart that an integrated setting was truly the best placement for him.

With all the school tours complete, all we could do was wait. Finally, I received an email from one of our two top choices. They said they were sorry, but they didn’t feel Carter was the right “fit” for their program. I was heartbroken and thought we would end up at a school I wasn’t happy with and wouldn’t challenge our son.

For a second, I thought, maybe they’re right, maybe my gut is wrong. Thankfully, later that same day, I received a phone call from the director of our top choice. Her voice was full of affection and confidence when she said, “We would love to have Carter join our program in the fall. Everyone just fell in love with him. He is the perfect candidate for our school and we’d be honored to have him.” I sighed in relief and cried tears of joy.

My advice to parents just beginning this process is to take the time to decide what type of environment you want for your child before starting your search. You should seek out the advice of people you trust, including your therapists, friends and other people who have children with special needs.

Practice articulating why you’ve decided on a particular setting. Don’t just let evaluators or “professionals” lead the process. You have to take on an active role from the very beginning. Most importantly, stick to your gut and follow your heart. No one knows your child better than you do. Continue to push for the setting you think is appropriate, not the setting other people assume is the answer.

Stacey Calcano the mighty

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 This New App Will Do for People With Epilepsy

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Phil Gattone experienced his first epileptic seizure at age 4 in the middle of the night.

He went on to experience roughly 300 absence seizures a day, an unusually high number, until he had brain surgery and started medication when he was in first grade.

Between brain surgeries, Gattone lost his ability to speak. He had to relearn things that came naturally to other children his age, but because of his support system, he bounced back.

Gattone

“My friends and family encouraged me to do what I was passionate about and find things to take the focus off epilepsy,” Gattone, now 28, told The Mighty.

That passion was computers. He studied electrical and computer engineering at Southern Illinois University. Last April, at a hackathon — where teams work collaboratively to solve a challenge using technology — Gattone connected with a team of developers and designers, Elisha Phoenix, Nick Cowat, William Judd and Ross Chapman, and came up with the idea for a mobile networking site for people affected by epilepsy there.

“A lot of people struggle to find a support system, and that can make it really difficult to live with epilepsy,” Gattone told The Mighty. “That’s why we created Neurish.”

App users can create a profile, and the app will recommend similar people nearby, as well as offer a list of resources such as doctors and support groups.

“It’s not just a communication profile,” Gattone explained. “It’s a medium to get someone to physical resources that can help them even more.”

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Gattone hopes the app will foster mentorship within the epilepsy community and provide support to those affected by it, including friends, family and caregivers. He told The Mighty that many people don’t understand how common epilepsy is and that people with epilepsy worry about being judged for their seizures. One in 26 people in the United States will develop epilepsy at some point in their lives, according to The Epilepsy Foundation of America.

“There’s still a lot of stigma associated with epilepsy,” Gattone said. “We’re trying to erase that.”

Transportation is also an area he hopes to address with the app. Most states require drivers to be seizure-free for a period of time before they’re allowed behind the wheel. (Rules vary by state. Check The Epilepsy Foundation’s website for more details.)

Gattone and the Neurish team are currently working with a neurotech accelerator, Neurolaunch, and partnering with the Epilepsy Foundation of America to help make their big goals a reality.

“We feel really confident that we can help a lot of people,” he said.

Neurish is currently in development. Gattone estimates it will be available for free download for the iPhone by the end of 2015. Visit its website for more details.

Official Neurish Logo

h/t ARLnow

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Twitter Pulls Ads After Charity Calls Them Dangerous to People With Epilepsy

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Twitter was under fire this morning for posting potentially dangerous ads to Vine, its video sharing service. The ads, which promoted Twitter’s #DiscoverMusic initiative, were 6-second-long videos of flashing lights, which could harm people with photosensitive epilepsy, The Guardian reported.

For about 3 percent of people with epilepsy, “exposure to flashing lights at certain intensities or to certain visual patterns can trigger seizures,” according to The Epilepsy Foundation.

Epilepsy Action, the U.K.’s leading epilepsy organization, quickly contacted Twitter about the risk of their videos. The ads were up for about 18 hours, according to Business Insider, but Twitter did take them down.

Clarification: A previous version of this article referred to Epilepsy Action as a nonprofit. The organization refers to itself as a charity.

 

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