The Mistake My Teachers Made Taught Me a Valuable Lesson About Autism

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If you are in a position to provide guidance to a person with autism, please hear my story. Please learn from the mistakes my teachers made.

The year was 2001. I had a very strong interest in malls, which still continues to this day. At the age of 10, I was writing the names of malls instead of my own name on assignments. One time, the whole class was working on a project involving illustrating books. Naturally, my version of the project was centered around malls. I became so engrossed in the project one day, I stayed behind in the classroom when I was supposed to leave with the other students to attend another class.

I believe that these issues were the reason my teachers decided to ban my special interests from the classroom. They removed my artwork from the wall because it involved the names of malls. I was not allowed to mention my special interests in the school building, lest I have to write 10 times that I would not do so. It felt like censorship. One time, I let a “Lloyd Center” slip out, and I had to write ten times that I would not say it again. I called this rule the “No-Mentioning-Malls Rule.” And I loathed it so much.

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Photo source: Thinkstock Images

During the month and a half that the rule was in effect, I dreaded going to school. This was especially unfortunate, because prior to this, I actually enjoyed going to school. Children who enjoy school as much as I did are a rarity. I remember crying myself to sleep at night because of the rule. I can remember being worried about the welfare of my favorite malls the morning after the 2001 Nisqually earthquake. The rule complicated matters when I wanted to talk to someone about my fears. Fortunately, the teacher’s aide I was talking to allowed me to momentarily discuss the malls with her.

I worked with a friend to develop a new language to get around the rule. I named the language “Clairesian,” after the friend’s nickname, which itself was derived from the Claire’s accessory store commonly found in malls. We came up with new words to refer to malls. For example, “Lloyd Center” was referred to as “Scwanza,” and Lancaster Mall was “Magekilanzo.” Using this system, I was successful in talking about malls without getting caught.

The rule was lifted by April 2001, and I rejoiced. Unfortunately, it returned in October 2001 during my sixth grade year. At this point, I began using a system of initials to circumvent the rule. For example, mall names like “Boise Towne Square” and “Westlake Center” would respectively become “BTSe” and “WCr” under this system. I remember a story the whole class had to read. It was about a girl who lost her brother. He had been a source of calm and happiness for her. Her father would not allow her to talk about him after he died. I have never related so much to a fictional character as I did with this story.

For the next 11 years, I struggled to forgive my teachers for making this rule. I would write my own songs and rewrite existing songs to express how I felt. Resolution came when I confronted my fifth grade teacher about the rule. She thanked me for sharing my point of view and told me that it was a valuable lesson for her to learn. In an unusual twist of irony, I learned she was blessed with a daughter who has autism. Today, we are good friends and I have met her and her daughters face-to-face a couple of times.

I forgive my teachers, but I will never forget the rule. It would be a disservice to autistic people everywhere to pretend it didn’t happen. The lesson I have taken from my experiences is this: People with autism are inseparable from their interests. Correcting improper behavior (such as me skipping a class or not writing my actual name on my assignments) is one thing. Oppression of special interests is a whole different story. It is a line that is never to be crossed. As a result of the rule, I have learned to stay true to myself and what I love in spite of such wrongdoing.

I hope to use my story as a warning to those with an autistic person in their care. I do not want anyone to have to deal with a “No-Mentioning-Malls Rule” like I did. Special interests bring comfort, joy and growth. My myriad interests have inspired many improvements in my life, such as losing nearly 70 pounds to fit roller coasters, and getting my driver’s license so I could visit my favorite cities, bridges and theme parks. I have considered careers in civil engineering and computer repair.

Special interests are vital to the well-being of autistic people like me. Do not oppress our interests.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How a Blind Superhero Is Inspiring Netflix to Make Big Changes

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Marvel Comics’ “Daredevil” is about a blind superhero on a mission to rid his city of crime. Although a tragic accident left Matt Murdock (Charlie Cox) unable to see, his visual impairment does not stop Daredevil from working as a lawyer by day and superhero by night.

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This Netflix original series released its second season on April 10. The gritty, action-packed season shows how Murdock succeeds despite his disability—he is a role model for both visually impaired and sighted viewers. Until recently, the show was deemed inaccessible for blind viewers because it lacks an audio description track.

After pressure from “Daredevil” fans, Netflix announced that they will add audio description tracks in addition to close captioning to the series, making the blind superhero’s saga accessible to visually impaired viewers.

According to Netflix’s blog, “Audio description is a narration track that describes what is happening on-screen, including physical actions, facial expressions, costumes, settings and scene changes. Customers can choose audio narration just like choosing the soundtrack in a different language.” Shows like “House of Cards,” “Orange Is the New Black,” “Unbreakable Kimmy Schmidt” and “Marco Polo” will get audio narration tracks within the next few weeks. Netflix plans to make all of its original shows accessible in the near future.

This increased accessibility is a big step toward making shows and movies more enjoyable to viewers.

Watch the trailer for “Daredevil”:

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We Got Used to Teachers Closing Their Doors as We Walked By. Then One Opened.

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“How many doors will suddenly close as we go down the hall today?”

“How many stares will we get along the way?”

“What if he stops to squeal, make his loud noises or stomp his feet so forcefully every few steps?”

“Please let us make it out of the building today without any hurtful incidents.”

Our son’s Comprehensive Development Classroom was at the very end of what I was convinced was the longest hallway in any school. Despite my son’s cerebral palsy and autism, we felt it was important for his developing motor skills for my wife to hold onto him and allow him to walk down that hall to and from his classroom every day, with her assistance.

Some days it was absolutely agonizing.

Some days it was arduous.

Some days it was heartbreaking.

In our household, autism seems to introduce itself at the worst possible moments.

While at the drive-in window.

While at a restaurant.

While walking down the hallway from the school’s entrance to my son’s classroom.

My wife would count the number of teachers who suddenly closed their own classroom doors shut as she and my son slowly made the trek down the hallway. She could feel the stares, the glares, and the fear in her own heart every day. Some days, fear would slip into the car and ride along like a passenger on the drive to school, whispering in her ear the entire time.

She wished more people understood. She wished more people would take the time to learn and understand what was happening.

My son was making happy noises. He was expressing his excitement, his joy and his genuine pleasure when he made those sounds. They were the only way he could express himself.

At the end of each day, when he would see his mother open the door to the classroom and call his name, he would squeal with delight. He would gingerly raise his arms, crippled by cerebral palsy, and hug her neck. As she lifted him up into her arms, he would kiss her cheek over and over.

Mother and son with a bond that defied any fear, any pre-dispositions, any attempt by the world to undermine it.

I call it his “happy dance.”

Beth is one of those teachers whose classroom my wife and son walked by with dread for so many years. She heard my son’s loud noises, and felt his yelps echoing off the hallway’s walls. She listened to his feet stomping every few feet.

But instead of closing her classroom door, she opened her classroom door.

This is what she told my wife.

“Once I learned that he was squealing when he heard your voice, it just made my day to hear him. He loves you so much and he is so blessed to be yours and he knows it! I had to open my door just so I could hear it.”

With eyes wide open, and her heart then wide with love, she opened her door to grace and understanding.

As parents of children with special needs, we have been given gifts. Too often we try to hide those gifts. Too often we make excuses or try to explain ourselves. We become defensive or defeated.

My son’s “happy dance” is an example of how that even though our pain runs so deep as special-needs parents, our purpose runs even deeper. His expressions are a gateway to grace and understanding.

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We have a choice. Our circumstances do not define us. We can choose instead to be defined by the way we respond to our circumstances. When we rise above our circumstances with grace, dignity, and pride, our sojourn impacts, inspires, and teaches others around us.

We can choose to hide behind closed doors, closed hearts, and closed minds. Or we can choose to open the doors and proudly display our gift to the world.

Sometimes you may need to unwrap your gift right in the middle of the hallway.

This post originally appeared on Not Alone.

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Artist Creates Powerful Mementos for Women Undergoing Chemo, Using Their Own Hair

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Sybille Paulsen, an artist in Berlin, is creating art out of loss.

Women about to undergo chemotherapy leave their hair to Paulsen, who then transforms it into intricate and sentimental jewelry as a part of her project called Tangible Truths.

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Each piece is handmade and can take days or even weeks to complete, according to Paulsen’s website. The jewelry helps women cope with the loss of their hair and the unique pieces invite others to ask questions and engage the individual about their story.

Each woman is touched differently by the sickness and its treatment,” Paulsen wrote on her website. “Not only the person concerned but also the people around them pass through a transformation in this period. Her partner, her family and friends experience her sickness in a personal manner as well. The artifacts that I create with their hair mark this transformation.”

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The artist’s inspiration for the project was twofold. Her fascination with unusual materials led her to use hair in her art, but it was when someone close to her fell ill that the conceptual foundation of the project was framed.

“It touched me very deeply,”Paulsen told The Mighty in an email. “Talking about it, I realized I was not alone with my feelings and thus I looked for a symbolic way to accompany the patient and his friends and family during his difficult phase.”

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In addition to a piece for the person undergoing treatment, Paulsen has also made braided wristbands and necklaces for family members and close friends. These pieces function as a symbol of connectedness and help bind everyone together during a difficult time.

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Via Instagram

“Although it is mostly out of my control how my work is read by the observer, I can say that my intention is to create visible reminders and anchors of the love we experience during such difficult times,” Paulsen told The Mighty. “And this love encourages us to go on.”

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Paulsen says that reactions to her work have been positive, especially among patients and caregivers. Some people are initially put off by the use of hair as a material, but when they see the work and touch it they open up to the idea.

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What Sybille created touched me really deeply,”Paulsen’s first client, Mary Beth, wrote on her website. “Her work touched not only me but also those close to me here in Berlin who have seen it or seen the pictures. One person close to me even teared up because the necklace still looked like my hair and was a reminder of what it had been… I love the idea of helping create beauty out of what for many of us is a ugly process: chemotherapy.”

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To commission a piece from Paulsen, visit this page. To see more of her work, follow her on Instagram or Facebook.

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The Swim-A-Thon That’s Helping Athletes With Disabilities Go to College

Transitioning from high school to college is no easy task but, for students with physical disabilities, the switch can be even more difficult. For 35 years, the Swim with Mike organization has helped athletes with physical challenges go to college. Inspired by Mike Nyeholt, an NCAA college swimmer who broke his neck in a motorcycle accidentthis event has grown to include more than 85 schools and 178 scholarship recipients. But Swim with Mike is more than an annual event; it’s a community of college athletes and alumni.
“Without Swim with Mike, I would have never gone to USC. It really jump-started my career,” Daryl Holmlund, a 2011-2012 scholarship recipient, told The Mighty. “As a person with disabilities, you have lots of other expenses to deal with so I never could have done it without Swim with Mike.” Holmlund is now a teacher at the Conservation Corps of Long Beach and swam 3500 meters for the event.
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Photo by Veronica An/The Mighty
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Photo by Veronica An/The Mighty
The 35th Annual Swim with Mike event was held at the University of California’s Uytengsu Aquatics Center, Saturday April 11. The swim-a-thon raises funds for students with disabilities to attend college.
Sharon Lee attends the University of La Verne in La Verne, California and told The Mighty Swim with Mike gave her the ability to pursue her dream. She studies biology with a pre-med concentration and plans to attend medical school. “This wouldn’t have been possible without Swim with Mike,” Lee said.
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Spencer Fox is a freshman studying chemical engineering at the University of Southern California and current recipient. “It’s pretty overwhelming for some people with a disability to come to a big school but Swim with Mike provides the framework for us to succeed,” he told The Mighty. He and his sister, Ruby Fox, have been involved with Swim with Mike in San Diego for the past 2 years.
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Photo by Veronica An/The Mighty
Swim with Mike involves the entire community. Dick Hunsaker, the grandfather of a recipient, has been supporting Swim with Mike for the past 10 years. “It’s great,” he said. “Seeing the smile son these students faces really warms your heart.”
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Photo by Veronica An/The Mighty
Sarah Reinertsen, former recipient told The Mighty, “I’m still living the dream as an athlete.” Not only is she the first woman with a prosthetic leg to complete the Hawaii Ironman, but she’s training for the 2016 Paralympics in Rio de Janeiro. She’s been an active member of the Swim with Mike community and continues to attend swim-a-thon events. “It’s important to always give back,” she said. “People can become disabled at any time, what empowers us is education. It empowers us to have an independent and successful life and, together, we can lift each other up.”
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Photo by Veronica An/The Mighty
Swim with Mike has raised more than $15 million dollars in scholarships. For more information and to find the swim-a-thon a you, visit the Swim with Mike website.
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Photo by Veronica An/The Mighty

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Powerful Comic Reveals What It Can Feel Like to Live With Anxiety

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Tumblr artist Spencer Salberg knows it can be hard for people living with anxiety and depression to explain how they feel. So three years ago, he decided to use comics to make a sometimes taboo subject easier to understand.

“I drew the anxiety comic during a time when my own anxiety had flared up pretty badly and was keeping me from doing even the simplest things,” Salberg told The Mighty in an email. “It felt really good to be able to take the feelings of that experience and externalize them somewhere else for a bit.”

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tumblr_m0xt4vwrwr1qzwx73 Though the comic is a few years old, its message is still relevant. Recently, Emily McComba, a blogger on XO Jane, wrote a powerful piece called, “I Didn’t Realize How Out of Control My Anxiety Was Until I Saw These Comics.

“[Anxiety] is a real thing,” McComba wrote. “It has a name, and I’m not alone.”

Visit Salberg’s heymonster Tumblr page for more of his art.

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