The Keen Senses of a Boy With Autism May Have Saved a Man’s Life

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Chase Faulingham was out walking with his grandfather in their neighborhood in the Halifax area of Nova Scotia, Canada when he heard a noise. The 5-year-old, who has autism, has only just begun to speak, but when he sensed something was wrong, he used his communication skills to compel his grandfather to stop. Even when his grandfather didn’t hear anything.

He heard a noise, and he said, ‘Stop,’ so we stopped,” Thomas Murray, Chase’s grandfather, says in the video below. “I didn’t hear anything, so we took a couple steps forward. [He said,] ‘No, Poppa Jim, listen! Listen! Help!'”

Turns out, Chase really did hear something. He and his grandfather climbed up a snowbank that had piled on the side of the road to find an injured man lying semiconscious on the other side, CTV News reported. They called an ambulance and waited with the man for it to arrive.

Chase’s community is hailing him as a hero, but no one is more proud of him than his mother, Jamie MacKinnon. “People, when they see a special needs child, seem to put limits on him,” MacKinnon says in the video below. “It just goes to show that he’s a healthy little 5-year-old boy.”

Hear more about Chase’s story in the video below.

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What I Hope for My Sons and Their Lives Together As I Get Older

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I don’t ever remember thinking, Will Neil and Jeff resent the time and energy Matt requires? Will they feel like they have had a diminished childhood because of having a severely disabled older brother? It never crossed my mind. Getting enough sleep to have the energy to keep up with 3 boys – now that crossed my mind, often!

Now Matt is 28, Neil is 24 and Jeff is 20. Matt lives at home with Mom and Dad, and Jeff likes to accuse him of being a lifelong “moocher.” Neil is the definition of a struggling actor in NYC, going on auditions, acting in small plays and independent films, and waiting tables to keep a roof over his head and cheap pizza in his stomach. Jeff is the definition of a struggling college student, trying to recoup that GPA from his freshman year of fun, studying, delivering pizzas for gas money, and living the high life in a dormitory.

Some parents of children with special needs find it difficult to balance the needs of their “typical” children and their child with needs. I’m not saying it was easy, but life was so busy and full during those first 20 years of parenting that I don’t remember wringing my hands about Neil and Jeff needing therapy later in life due to my inadequacies.

I knew from the beginning that Ed and I were never going to be perfect parents, and I often reminded all three of that! Neil and Jeff learned that they were loved, cherished and part of a family unit. If we screwed up in a parenting decision, we admitted fault and apologized, but we never apologized for any part of Matt being in their lives.

Early on, I let Neil and Jeff know that every person in this family had a part to play. No one was more important than the other and we help each other in this family. I didn’t use them as “slave labor,” but when they were old enough, I definitely would ask them to fetch me a diaper or wipes, or change the TV for Matt.

I think that sibling relationships are the basis for how we treat others in life later on. If we let our children think that the world did not revolve on its axis until they were born, then that’s not love, that’s setting them up to be whiny, self-centered pains in the butt.

If someone felt unhappy in this family, Matt was off-limits for being the reason… too easy a target and truthfully, how could a severely disabled person wield that much power? Instead, those feelings were addressed and analyzed, and plans were made to change or adapt.

But seriously, I don’t ever remember my boys complaining about Matt. As they told me often, “He’s just Matt. I can’t imagine him any different.” Pure, simple brotherly love. We are not a whiny family. If there is any “whine” in this house, it’s usually a Chardonnay or Merlot!

Sometimes Matt was the most demanding, while other times Neil made us wonder how much more gray hair we could grow, or it was Jeff giving us heart palpitations. “Typical” children challenge your life, too, but in different ways than your child with special needs. We have jokingly stated that with Matt, at least we know where he is at all times and who he’s hanging out with and what they are doing… the same can’t be said for the other two! But seriously, our boys have been delightful and not too wacky; no jail time for either!

We’re at a later point in life, and we think about future plans and how typical siblings fit into that. Each family is different, so for our family and our boys, we want them to be kind, productive, adventurous and compassionate. I pray that they have purpose in their lives, not just about their desires, but also about helping others.

It is mine and Ed’s responsibility to plan for Matt, and I hope that Neil and Jeff will be a part of his life. I will not force them or guilt them into promises that will crush them later. They have learned so many lessons already and have taught us and others from their experiences. They love Matt unconditionally, and they treat him like a young adult brother, giving him grief and giving him hugs.

We won the lottery with these three young men, and we are so grateful for the love they show to each other, to us and to the wide world they are stepping into.

Go forth, Brown boys. You have wings that are ready to take you to places unknown.

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He Came Up With a Wheelchair Challenge. It Landed Him in the White House.

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Archer Hadley was stuck outside the front doors of his high school in Austin, Texas on a rainy day last fall. The 18-year-old has cerebral palsy and uses a wheelchair, so some tasks, like opening heavy doors, are difficult for him. As he worked to pry open the school doors just enough to slip inside the building, he realized how he could make his high school more accessible — he would work with the school on installing automatic doors at three of its entrances.

When he was told the doors would cost $40,000, Hadley created the “Wheelchair Challenge,” a fundraiser where students at Austin High School challenged each other to spend one full day in a wheelchair. When a student challenged someone, he or she paid $20 to go toward building the doors. His project caught on, and people who don’t attend the school began sending in donations. Hadley raised more than $87,000, enough to make every entrance at Austin High School more accessible for students using wheelchairs, KXAN News reported.

Meanwhile, some of Hadley’s classmates were catching his story on camera. They compiled his project into a short documentary, The Archer Hadley Story, which was among 15 student-made films selected from more than 1,500 submissions to screen at the second annual White House Student Film Festival, Disability Scoop reported. Festival submissions all focus on service and giving back to the community. President Barack Obama honored the students’ efforts at the White House on Friday, March 20. Hadley and the students who made the film attended.

“Archer is giving back to his community by providing the ability for students, faculty and any visitor who comes to our school to feel welcome,” Nicole Griffith, Director of the Academy of Global Studies at Austin High School, says in the documentary below. “This project is going to help the community for years to come.”

Watch the entire documentary about Hadley’s project below.

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To Anyone Who’s Ever Given the ‘Pity Smile,’ Please Read This

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When we head out into the world, there’s no missing us. I understand that.

Not only is my daughter, Lu, in a wheelchair, but she has to have a chest harness in addition to the regular lap belt. Otherwise, she’d fall out. She needs to have her feet buckled in to keep them still and safe. Then we add the big metal bar holding up a device that most people (oddly) assume is some sort of entertainment apparatus. Her Pragmatic Organization Dynamic Display (PODD) book generally hangs from the handle. Sometimes her feeding pump is clipped on as well. And then don’t forget her constantly flapping arms, the noises she makes as she holds her breath and her sometimes loud vocalizations.

I get it. We’re not going to go unnoticed when we venture out into public. What I wish could be different about our society in general, however, is the reactions other humans have to seeing a person with a disability.

I call it the “pity smile.” I also completely understand that this type of reaction is 100 percent preferable to maybe a look of disgust, annoyance or hate. I know. But what I wish others would understand is that we (the entire community of people living with or caring for people with disabilities) do not want your pity.

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I have, for the most part, just quit even looking at people as we walk through crowded places, but then occasionally, I accidentally do, like this past weekend. We’d just finished a nice lunch out with my husband, Chad’s mom, and as Chad pushed Lu through the crowded restaurant to get to the exit, we could’ve been suffocated with the pity smiles. This is what I feel like those smiles say:

“Oh how sad.”

“Look at that poor little girl.”

“Look at that poor family. I wonder why that happened.”

And so on, and so forth. To people who have never experienced this type of reaction from others, you may think I’m being overly sensitive, making assumptions or just being silly. But I promise you, I’ve seen these looks enough times throughout Lu’s short life to recognize them for what they are.

Lunch was a success, Lu ate well, and we’re all smiling and happy, so why feel sad for us? Believe me, no one — no one — knows the sadness that comes with a disability as well as the people affected by it. But I wish others could shift their thinking to view the successes, strength and possibilities of people with disabilities, instead of just feeling pity for them. I don’t want Lu to realize at some point, if she hasn’t already, that people often look sad when they look at her. Not everybody delivers the pity smile, of course, but sometimes it can be overwhelming and frustrating.

I feel like the general view of people with disabilities is that they are “less than.” One of the biggest reasons I write my own blog is to share how Lu defies that view every day in every way we can manage. I write to present an alternative view of what life with a disability or multiple disabilities can be. No one needs to feel sad for her or us. I would challenge our society to try and look past what they consider “sad” and find the positives. For example: Even though it’s clearly quite an endeavor, we’re still out eating in a restaurant or shopping for a new dolly or going to the zoo. Maybe someday, more people will look at us differently.

This post originally appeared on Understanding Lu.

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How My Brother’s Epilepsy Changed Me

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Dear Epilepsy,

I first met you when I was 5, although I don’t remember much about that. Only the sound of sirens, as paramedics took my brother away. You came once more in brief flashes, small seizures dotting my preteen existence. I never thought you were a big deal. And maybe that was the problem. Perhaps you just wanted your presence to be known.

It was a few days before Alex and my shared birthday when you crashed on our living room couch. See, that’s when I remember you striking him down. You grew stronger quickly, until finally the car pulled out of the garage and my parents were off to the city’s ER. Thanks to you, I spent my 12th birthday in a hospital room, my brother with wires glued to his head.

You didn’t back down from there. No, ruining a birthday was not enough; you had to push harder. And you did. Epilepsy, it’s time. I want to tell you what the year that followed was like for me.

I’m not quite sure when the cycle started, but pretty soon it picked up a familiar tune. I expected Alex to be in the ER at least once a week. I would come home with my other siblings to an empty house, call Mom to hear the noises of a hospital in the background. You were like a puppet master, manipulating my family into a side show of tears and desperation.

Epilepsy, would you care to hear what a seizure feels like? Home alone, and a crash in another room sends you flying. There’s your brother, twisting and jerking on the wooden floor, choking on air. He’s soaked in sweat, but you grab him anyhow, pull his deadweight body into your arms. Hold his head steady so it won’t bang against the cabinet. You’re crying, but there’s nothing you can do. Epilepsy: you are the feeling of losing control.

I once heard that the song playing when you find out someone died will forever be associated with that moment. Every day, coming home from school, I’d turn off my iPod. I expected to find my brother dead, and I didn’t want a good song “ruined.”

At school, I could hardly concentrate. You were on my mind constantly. I would sit in class and have flashbacks from the previous weekends. Tears would fill my eyes as I struggled to pay attention in math class. My friend had to be taken away from school due to an allergic reaction, and I hyperventilated. School was supposed to be free of ambulances.

Yet, you changed me, Epilepsy. Despite the incident at school, I have become equipped to deal with medical emergencies. I have placed a greater value on the life of those I love, because you made the probability of me losing someone so much greater. I know that if I can survive what you did to my family, I can manage anything life throws at me.

This is a twisted sort of thank-you note. Don’t read into the words “thank you,” because I shall remind you, Epilepsy, that I hate your guts. But I appreciate the lessons you have taught me. I have not come out of your madness unscathed, but I have come out changed.

Doctors have found the combination of pills that keeps you at bay. My family (yes, my family, you affected all of us) has been free of you for over a year, and we intend to keep it that way.

Epilepsy, you made “hell” take on a new definition. And yet you have simultaneously redefined the word “heaven.” I don’t know whether or not to thank you. Whatever. Just get out of my life.

Sincerely,

Kathryn Malnight

Do you have a story about your experience with epilepsy? Please send it [email protected] include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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To the Disorders That Left This Mom Heartbroken

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Dear Cardiofaciocutaneous (CFC) Syndrome and Epilepsy,

When I found out I was expecting a baby girl, I was full of joy. I had so many plans for my baby girl, who we named Harley.

I would get to watch Harley enjoy her favorite foods, run, and play dress up. I would get to help her pick out dresses for her many dances. I would get to watch her graduate from high school. I would help her plan her wedding, pick out her wedding dress and watch her walk down the aisle. I would get to witness Harley having her children. We would be the best of friends.

But y’all had to come along and shatter all my dreams I had for my beautiful daughter. Y’all would make the simplest task so hard to achieve. Y’all would take my beautiful daughter’s smile and laugh, and it would be so long before she would get them back.

renee melvin the mighty

Y’all took her ability to eat and enjoy food. Because of y’all, Harley would never be able to sit up without help or walk. Because of y’all, Harley and I spent so much time in the hospital away from our family.

I curse the day y’all arrived, because y’all changed our lives. As if y’all had not already taken enough, on March 12, 2009 after fighting for 10 years, two months, and six days, Harley took her last breath in my arms and lost her battle against y’all. Y’all changed my life, and left me with a shattered heart forever.

renee melvin the mighty

From One Heartbroken Mom,
Renee Melvin

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