My Son Lives In His Own Little World. Here’s Why I Envy Him.

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Sometimes my son has this look on his face like he sees things we don’t.

He tilts his head to the side and grins softly, as if heaven is playing a song just for him. He twirls his fingers to the music. Early in the morning I can hear him over the monitor in his room making sounds and expressions none of us can understand. I think he is talking to God in a language only the two of them know.

Sometimes I think Jon Alex sees angels. Sometimes I think he hears the music coming from heaven’s chorus. Sometimes I think he talks to God… and God talks back to him.

Sometimes I get jealous of his world.

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Oftentimes we describe our children with autism as “living in their own world.” Their senses are overly acute in many instances to touch, sound, sights, smells and the tactile evidence of the world around them. And they can seem far more interested in their world than in ours.

Maybe they really aren’t living “in their own world.” Maybe they are living in the world as it was originally created.

My son Jon Alex lives in a world of unconditional love and acceptance. In his world grace abounds, loves triumphs over all, and contentment can often be found with the simplest of things. His world is one of purity, simplicity, innocence, and goodness.

I’m jealous of his world.

His world isn’t polluted by envy, jealousy, pride and hatred. His world is enticing, even beckoning. His world puts an equal value on all people, seeing them through the eyes of significance, kindness, and human dignity.

Maybe we are the ones living in our own little world.

Have you ever been mesmerized by a child with autism and wondered what they were thinking, or what was going on in their mind? Have you ever looked at that child and wondered if they were thinking the same thing about you?

When you have been puzzled by their behavior or baffled by their routine, have you ever wondered if they feel the same way about your behavior or routines? When you have struggled with their personality traits that can seem peculiar, have you ever wondered if they feel the same way about some of your personality traits that seem so peculiar to them?

Maybe instead of focusing on drawing him into my world, I need to boldly venture into his world with expectation. I know I have learned far more from my son than he has learned from me. I realize now he’s nothing like me and yet he is everything I want to be.

Maybe I am the one who needs healing.

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This Is a Rap About Epilepsy. You Heard Us Right.

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Rap may not be the first thing that comes to mind when raising awareness about epilepsy. But the clean and catchy rap below, “How We Do It,” advocates for better treatment of people with the disorder.

The video, commissioned by The Epilepsy Foundation of Western/Central Pennsylvania, was a community effort that features a bunch of Pittsburgh CEOs rapping their hearts out. It also features Brett Keisel and Art Rooney II of the Pittsburg Steelers, as well as students from Pittsburgh’s City Charter High School.

We applaud these folks for finding a clever way to spread awareness.

Ch-ch-check it out:

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Watch as a Blind Man Lays Eyes on His Wife for the First Time in 10 Years

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Allen Zderad, 68, is completely blind, but with the help of a bionic eye, he just laid eyes on his wife for the first time in a decade.

Zderad, who lives in Minnesota, began losing his sight 20 years ago due to retinitis pigmentosa, an eye disease in which the retina is damaged, New York Daily News reported. For the last 10 years, he’s only been able to make out extremely bright light. Now, with an implant installed by the Mayo Clinic and a set of prosthetic glasses, Zderad will be able to see his wife, Carmen, and the rest of his family.

“Obviously, I’m not able to see the details and facial features and so on,” Zderad told Yahoo News. “But just being able to acknowledge [my family’s] presence, not only by sound but also the image I get, is pretty exciting.”

Zderad has no trouble finding his wife amongst a group of people. “It’s easy,” he said, according to Yahoo News. “She’s the most beautiful one in the room.”

Watch the heartwarming moment Zderad first sees his wife through the glasses in the video below.

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Kids With and Without Disabilities Solve Mysteries Together in This Dad’s Awesome Book Series

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Richard O’Brien always worried his son’s appearance would deter other children from wanting to get to know him. Connor, 11, has cerebral palsy; he uses a wheelchair and speaks through a communication device. So to help teach his son’s peers about disability, O’Brien created “CJ and the Angel Kids,” a children’s book series where kids with and without disabilities play together uninhibitedly.

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Connor and Richard O’Brien, courtesy of Richard O’Brien

O’Brien, a chemistry professor who lives in Semmes, Alabama, says he can trace the moment the book series was born to one specific day in 2006. He was sitting in church with his family when he felt a tap on his shoulder. He turned around, but there was no one there behind him.

“I knew I was being called to do something, though I didn’t know what it was at the time,” he told The Mighty. He later came up with the idea to develop a mystery series, drawing inspiration from from his and his family’s lives.

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Courtesy of Richard O’Brien
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Courtesy of Richard O’Brien

“CJ and the Angel Kids” is a collection centering on five kids who each live with a disability. The main character, CJ, has cerebral palsy, like Connor. Dee Dee has Down syndrome, Andy has autism, Stu has dyslexia and Rosie has a stutter. Each book finds the kids at a different summer camp.

“The camps bring together all kinds of kids. Some have disabilities and some don’t,” O’Brien told The Mighty. “The kids who have disabilities have a mystery to solve in each book, and they work with the typically-developing kids to solve it. The bottom line is acceptance and inclusion. They’re all just kids. They all want to be included and they all want to do the same things.”

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Via “CJ and the Angel Kids” Facebook Page

The first installment, “The Case of the Missing Cookies,” was published February 2014 and is all about how differently-abled children interact with other kids. “The Tale of the Talker,” which deals with bullying and jealousy, was released in November 2014. A third book, “Mystery of the Medals,” centers on body shaming and is slated to be published this spring. O’Brien says there are three additional books in the works for later this year and next.

Each book is cowritten by Andrea Pointer, Connor’s speech therapist, and illustrated by Morgan Mabry, a high school student at Mary G. Montgomery High School, AL.com reported. The series is published by Eagle Printing, and all proceeds go to United Cerebral Palsy of Mobile.

“The purpose of the books is to increase awareness, but also, I think, to make sure differently-abled kids are approachable by other kids. I see when we go out that they’re afraid, they’re nervous, and we don’t want them to be nervous,” O’Brien says in the video below. “They’re all kids, we just want them to be able to interact.”

Hear more about O’Brien’s inspired project in the video below.

For more information about the “CJ and the Angel Kids” book series, visit the project’s Facebook page.

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To the Woman at the Boardwalk Who Offered to Take Our Picture

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At 15, my son, Alex, and his twin brother, Jamie, began to run in mainstream races and marathons with the help of dedicated guides from Achilles International and the Rolling Thunder Club. Passionate about running in their own separate ways, Alex, the fast one, races with the elites. Jamie, the slower one, runs at a leisurely pace listening to his iPod, with his dad or me. So when we plan a family vacation, our choice has two prerequisites: a place to run and a bike.

Alex has a coach and several elite runners who run races with him. But on vacations, I blissfully ride my bike next to him, where I can watch him glow in the rhythm of his most comfortable “forever pace” of a 7-minute mile.

Vacationing in Virginia Beach offers a three-mile boardwalk, with a separate bike path for rollerblading, biking or surrey rentals. Jamie and Dad start out first. I hop on my bike as Alex watches every move I make; he’s ready to go. As he starts his run, I watch in amazement as the transformation occurs. My profoundly autistic son with severe anxiety changes into someone with such inner peace. He’s in a total state of focus, transcending the limits of his abilities as he flies by rollerbladers, bikers, runners and walkers, with little concern about these obstacles in his path. I peddle with every ounce of strength to keep up, barely able to politely yell out to those in our way, “Runner coming through! Passing on your left!” He will slow down when instructed, but we keep this fast pace because I know it’s what makes him the happiest. The sparkle in his eyes and his beautiful smile —this is my high for the day.

When we reached the end of the boardwalk we stop to drink and sit down on a bench. Sitting close together, I rub his back and wipe his face. As I take out my phone to take some pictures of him, he stands up, eagerly poses and smiles. Minutes later he begins to wave his arms and vocalize unintelligibly, unable to communicate what he wants. A wave of panic settles over me. I know he’s ready to run again.

As I offer him another drink, I notice a woman staring at Alex. I stare back, waiting for her to look at me. I’m ready to defend him, defend autism — as I have for years — and wait for any disparaging remark she may utter. Instead she comes over to me and asks if I would like her to take our picture together. She’d been riding behind us the entire stretch of the boardwalk and was watching Alex run. She says she was in awe of his running ability, and after observing us together, felt compelled to let me know how inspired she was. Minutes later, Jamie and his dad run over to us, having just completed the first lap of the boardwalk run. The woman then offers to take a family photo; one for us, and one for her, to remember our family and this day.

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Thankful for this moment in time, I realized how powerful these chance encounters are. They help create an awareness of the many facets of autism and how people view individuals and their families living with autism. Neither Alex nor Jamie has any idea how they impacted the life of this stranger. But the imprint they left was one small way of saying, “Thank you for appreciating me”.

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5 Must-Watch TEDTalks That Challenge the Way We View Disability

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TEDTalks often challenge us. To think differently. To learn. To be better people. To recognize a problem that needs solving. We’ve seen a handful of talks that do all of the above. But we’ve deemed the five TEDTalks below as particularly Mighty. So if you have some time today, challenge yourself.

1. Stella Young, I’m Not Your Inspiration, Thank You Very Much 

Young, who passed away December 8, 2014, tells it like it is in the powerful TEDTalk below. Listen to her brilliantly debunk the lie we’ve all been told about disability.

I am not here to inspire you,” she bluntly says. “I am here to tell you that we have been lied to about disability. Yeah, we’ve been sold the lie that disability is a Bad Thing, capital B, capital T. It’s a bad thing, and to live with a disability makes you exceptional. It’s not a bad thing, and it doesn’t make you exceptional.”

2. Caroline Casey, Looking Past Limits

Casey has ocular albinism and spent most of her life fighting against her visual impairment. But through a personal journey, she learned how to reshape her worldview. Her self-acceptance led her to found the nonprofit, Kanchi, which raises awareness about disabilities in the workplace.

“Disability is like the elephant in the room,” Casey explains below. “And I wanted to make you see it in a positive way — no charity, no pity.”

3. Rosie King, How Autism Freed Me to be Myself

“All in all, I wouldn’t trade my autism and my imagination for the world,” King says in the TEDTalk below.

This incredible woman goes on to say how autism shapes her life. She invites others to embrace their differences. King is an activist for inclusion and enthusiastically shares her goal of creating a more tolerant world for people with disabilities.

4. Aimee Mullins, The Opportunity in Adversity 

I had never once in my life looked up the word ‘disabled’ to see what I’d find,” Mullins says in her talk below. This Para-Olympic athlete goes on to explain why she refuses to be defined by her disability. Not only does she make the best of her situation, Mullins uses her disability as motivation to surpass her goals.

5. Sue Austin, Deep sea diving…in a wheelchair

Austin discusses her adventures in deep sea wheelchair diving and explains how these experiences prompted her to see the world — above and below sea level — through new eyes. Austin refuses to be defined by others’ opinions.

I was seeing myself not from my perspective but vividly and continuously from the perspective of other people’s responses to me,” she says in her talk below. “As a result, I knew I needed to make my own stories about this experience, new narratives to reclaim my identity.” 

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