What I Want You to Know About My Misunderstood Autism

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My son, Philip, is 12 years old and has nonverbal autism. He has been communicating through spelling on a letterboard and typing for three years. We credit Soma Mukhopadhyay’s technique Rapid Prompting Method (RPM) for developing his skills to allow his voice to be heard. Before Philip could communicate, I had no idea what my son thought or felt. I had made many wrong assumptions about what he understood and needed. Through his blog, Philip has been educating me and his readers by answering their questions and explaining his insider viewpoints about autism and the world as he sees it.

In My Misunderstood Autism

I am Philip. I believe God made me this way. When I was younger, no one appreciated me being autistic. I was seen by my deficits, not as a person. It made me feel so lost. It was the worst. I am so happy I am no longer there. I thank God and Soma for getting me out of my silent prison. Being thought of as “retarded” and “unteachable” is like being locked away in solitary confinement, except people are all around me thinking I am not there.

I talked with a mouth which did not say what I wanted to say. Meaningful words stayed behind in my mind. How I wanted to get them out. People assumed I only thought what I said. I was not in control of my body either. I made many mistakes on my school drills. I felt like I had amounted to a pet to train through ABA (applied behavioral analysis). It wasn’t the right fit for me. Instead, the solution accepted by my friends and me is acceptance of autism as another way of being. Then good education and a reliable means to communicate must be given. Addressing anxiety and brain-body disconnect is also important.

Each day I am learning as a neurotypical learns. I can understand everything people say. I mean to be able to do more to show people I am smart. Autism can really make it hard to control your body. In my case, I can look like I don’t care or I can’t comprehend. I think many autistics are underestimated like I was. I am learning some easier ways to good communication. Pointing to letters is easier than speaking. No method has helped me more than Rapid Prompting Method (RPM). I was able to show I could learn. I am advocating for regular education with accommodations such as using iPads and letterboards in the classroom.

I think many autistics invite mental challenges. Good instruction about the world prepares us to choose an interesting life for ourselves. I prefer learning to what I consider childish ABA activities. I advise being very patient with us doing academics. We can understand what you teach, but our bodies might betray us. Most of the time I cannot be independent in my work because my body gets distracted so easily. I believe if you assume competence, we will do better. Meaningful pieces of good advice can prepare us to enter the learning world with a good attitude toward others. I can very much feel freer to hear you and respond if you care and are persistent.

I search among people a quality of lots of motivation to get to know me. My success comes from a lot of Mom persisting I work every day. A quest of mine is getting parents and teachers to practice RPM more.

Autistics like me need believers in us. We need you to accept our challenges and help us work through them.

Follow this journey on Faith, Hope, and Love…With Autism.

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

Editor’s note: This story represents one person’s experience and opinions.

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How My Dyslexia Set in Motion All the Greatest Things in My Life

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It’s serendipitous that my passion for science started in third grade, although it didn’t seem like at the time. I hated third grade. It was the year the teasing began. The year I spent every night crying. The year I wish I could forget.

The biggest, meanest bully in the whole school happened to be in my class. He was my teacher. He picked on me and made fun of me the entire year. I was diagnosed early on with a very obvious and often debilitating case of dyslexia, which affected me severely in English and mathematics. This made me a very easy target for my horrible and disgruntled teacher. To make matters worse, the whole class followed his lead. Because of my dyslexia, I was forced to watch like an outsider while kids played, learned math and read books. I found myself isolated, without friends and falling further behind every day. Each school experience was wrought with heartache and was permanently scarred into my memory. There is not a year of my life I remember more vividly than third grade.

My teacher was eventually fired. He shoved a little boy into a bookshelf and was let go with just weeks left in the school year. It was toward the end of his time at my school that our class had a guest speaker come in and do a physics demonstration. It blew my little mind. Nothing he did was new. I had seen pulleys and ramps and levers. I already knew what they did. What I didn’t know was how they did it. The demonstration took something so common and boring and made me see it in an entirely new way. All of a sudden, I became aware of the invisible forces of the universe.

As the years went on, my life improved socially. But I could never get caught up academically from the year I lost in third grade. I continued to struggle in school. In an attempt to help me achieve “attainable” goals, my educators suppressed and discouraged my passion for science. Instead I was always steered in the direction of careers that I “would be more capable of achieving,” but unfortunately was less interested in. Despite my resistance and best efforts, I couldn’t overcome who my educators thought I was. My high school math teacher told me I was unteachable. My English teacher said extra tutoring would be a waste of both our times and the guidance counselor advised me against taking any courses that were too challenging.

Through immensely hard work, I got into university and studied international affairs. But as much as I enjoyed my program, I still couldn’t forget third grade and couldn’t forget science. As the final weeks of university approached, Newton’s third law of motion weighed heavily on my mind. So, with my liberal arts degree in hand and absolutely no qualifications, I began applying to as many science-related jobs as I could. I relied on my belief in Newton’s third law of motion and the knowledge that it would help me.

I’ve always remembered the third law. If you asked me to tell you the first and second laws, I couldn’t. But that third law…it struck a cord with me. I thought often of it when life got tough. It tells us that for every action there is an equal and opposite reaction. Anyone who has observed the kickback of a gun or seen footage of a rocket launching to space knows that this is true. It’s a simple concept but an important one.

I quickly came to believe that Newton’s third law of motion had real-life implications outside of the context of physics. Even in the events of day-to-day life we experience the equal and opposite reaction. For example, good often emerges from bad and we triumph over struggle. For me, Newton’s third law of motion meant that while I never got to pursue my academic dreams, I was able to enter a versatile program where I would share all my classes with a boy who would become my husband. Had I been able to pursue my dream to work for NASA, I would have missed the love of my life.

As the forces of my life were pushing me away from science, there was a powerful counter-force pushing me to try more things, do more things and, therefore, find more opportunities. This led me to my career in surgical devices, which I love. It allowed me to spend every day in an operating room engrossed in science, but in a way that was never sabotaged by my dyslexia. Most importantly, the opposing forces of Newton’s third law of motion meant that all my pain and struggle to find meaning in a life that robbed me of my passion led me to my most exciting, most meaningful and most rewarding ambition of all…being a mom. My struggles were great, but they were not the only forces in play. The counter forces were there, too, and they gave me my life, my career, my love and my boys. In this way, dyslexia may just be the greatest thing that ever happened to me. My disability set in motion all the greatest things in my life, and I’m grateful for it.

So my sweet boys, please absorb Newton’s third law of motion and think about it as you go through your journey with dystonia and things get hard. For every action there is an equal and opposite reaction. All that pain you feel in your legs sucks. But from this will come tremendous strength and perseverance. This will be a huge asset as you mature into men. When you feel solitude and isolation from the world around you, at home you have a whole bunch of people just like you. When you feel misunderstood, you are gaining empathy and compassion for those around you. When you feel singled out, you are gaining a strong sense of self. Where you find pain, you will learn to find humor. When you feel fear, you will learn the power of bravery. When you feel overwhelmed, your mom and dad will be here for you and you will feel love, too.

For all the challenges you will face, remember good is happening, too. I need you to remember to open your eyes and see the blessings happening during these challenging times. See the compassion, the love and the support. It’s all around you and it’s everywhere. It’s easy to lose track of it when we are feeling our worst. The good can hide lurking in the dark waiting for you to find it. So please, get up and look for it. Find a way to see the powerful positive forces blessing your life, pushing back against all that seems impossible to face. Know that the stronger your adversity, the stronger the reaction is on the other side. Good comes from the even the most unfortunate of circumstances. So when it seems no good is in sight, think of this third law and get up and find the equal and opposite reaction.

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research FoundationTo sign the White House petition to have September formally recognized as Dystonia Awareness month, click here

Follow this journey on Raising Dystonia.

Lead photo source: Thinkstock Images

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This Kid’s Wheelchair Costumes Bring Dress Up to a Whole New Level

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This is a kid who knows how to do costumes right.

Harrison, 7, from Adelaide, Australia, has spinal muscular atrophy type 2, a genetic condition which affects the nerves that control muscle movement, according to Muscular Dystrophy Australia.

Harrison was diagnosed when he was 16 months old, and he was able to walk with a walking frame until he was about 5, his mother Colleen ONeill told Novita Children’s Services, a South Australian community-based children’s service organization Harrison is involved with. Because of the degenerative nature of his condition, Harrison has been using a powered wheelchair for the past two years.

Last year Harrison became interested in “Star Wars.” His father made him an R2D2 costume for the Book Week Parade, which is an event at Harrison’s school where kids dress up as their favorite characters from books or movies.

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This year, Harrison’s father decided to make a costume from the movie “How To Train Your Dragon.” He made Harrison’s wheelchair into the character of Toothless the dragon and Harrison dressed up as Hiccup, Toothless’s friend.

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Harrison’s dad found the instructions to make these costumes online and enlarged the design. Then he pasted it on cardboard, cut it out and joined it all together on Harrison’s wheelchair.

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Harrison is now known for his creative costumes at his school, Mitcham Primary.

He was the toast of the school the last 2 years,” ONeill told Novita Children’s Services. “The kids and teachers love his costumes and he is very proud to show them off. The smile on his face is priceless.”

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Teenage Waitress Does Kind Deed for Couple Facing a Cancer Diagnosis

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Daniela Bossi, a 17-year-old server at Brother’s Pizza in Mercer County, New Jersey, is thrilled to make $40 or $50 in tips during a shift, News 12 New Jersey reported. Yet, when two customers facing a cancer diagnosis came in to the restaurant, Bossi didn’t hesitate to pay their tab for them with her own money.

Rick Lewallen, who’s currently undergoing treatment for brain cancer, went out to eat with his wife Annette last Thursday, August 27, NJ.com reported. It was a rare treat for the couple, who don’t go out to eat much since medical bills have begun piling up. When it came time to pay the check, the couple found out Bossi, their server and a family friend, had covered it already.

For putting up the biggest fight,” Bossi wrote on the check, “this one is on me.”

 

 

Daniela Bossi, a Notre Dame High School student and waitress at a Hamilton pizzeria, recently put her Christian values...

Posted by Trenton Monitor on Monday, August 31, 2015

 

Bossi initially paid with her own money, but when her employers found out about her kind deed, they reimbursed her.

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Bossi with Rick and Annette Lewallen , via Instagram

It was a vote for humanity,” Annette Lewallen told NJ.com. “I’ve finally stopped crying about it.”

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When My Son With Autism Befriended His Bully

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There was a lot of good that happened to my son, Brock, in his first year of public school, but there was also something happening to my son that is a fear for all parents. My son was getting bullied. Brock made some really good friends in kindergarten, but outside of school, he was going through something I’ve feared for a very long time. A neighbor boy who is a few years older was bullying him.

It started one day at the end of winter. Brock was playing football with all the neighborhood kids. I was sitting on the sidelines reading a book when I ran into my house quickly. When I came out, I heard something that made my heart drop. I heard this child mocking the way my son ran. Brock has some developmental delays and part of that causes his legs to turn out and his knees to turn in when he runs. It would be very noticeable for someone who hasn’t been around my child much. So when I heard this child yell really loudly, “Look at Brock running, what are you retarded or something?” the tears instantly came to my eyes. I walked up to Brock, who had also started crying at that point, grabbed his hand and walked away. I had a million things I wanted to say to that child, but my first priority was my son.

I held Brock for a long time that night while he was crying, and he said something to me that completely shattered my heart. He said, “Why do I run so funny, Momma? Please help me be the best runner ever.” Thus started our daily runs.

Over the course of the next few months, the bullying didn’t subside; the teasing got worse. I saw my child turn into himself more and pull away from all the people who cared about him. Every morning before Brock got on the bus, we’d always say our “I love you’s” and pat each other’s backs (it’s Brock’s sign of affection). If for some reason he’d forget when the bus pulled up, he would either run back or yell, “I love you, don’t forget that.”

One morning when the bus pulled up, I bent down to his level to pat his back and say I love you. The meanest look I’ve ever seen crossed my son’s face. He said, “Don’t touch me. I’m not a baby anymore.” I was completely taken aback. I said to Brock, “I show you affection because I love you. Did someone say something to you about it?” He replied in the affirmative and said the neighbor boy called him a “momma’s boy baby.”

After the months of teasing, and later learning was he was also tripping and pushing my son, he came home one day with marker covering half of his white-blonde hair. I decided it was time to have a talk with the child’s father. Some may ask why I didn’t do it sooner, and but when I did talk to the father, he laughed in my face and said something along the lines of “That’s my boy.” He is a person I’m not very comfortable around.

I had some talks with Brock as well and told him to ignore him, and I started driving Brock both ways to school. He was much happier, and anytime the neighbor boy came to the door and asked to play with Brock, I’d decline for him.

That all changed this summer when I bought a pool for Brock and the child asked if he could play, too. I told him, “I’m sorry, but under the circumstances I’m going to have to say no.” So when Brock said, “Just let him, Mom,” I was surprised. When I asked Brock why, he said, “You always say to be nice to everyone and that wasn’t very nice.” I asked Brock if that’s what he really wanted and he said yes. I looked to the neighbor boy who had been the cause of so much pain in my house and said, “The first time you say one mean word, put your hand on or tease my son in any way, you’re out.” He promised he wouldn’t.

So this is how an unlikely friendship started. Every time he’d come to my door and ask to play, I would be right there. I did that for a whole month until Brock asked if I could basically back off a bit. So I did. Sort of. During one of their times playing together, and my times eavesdropping, I even heard an apology. My son said to him, “It’s OK, don’t do it again. Everyone needs a friend.”

The child who was bullying my son doesn’t have the best home life. He in turn lashed out at my son. They aren’t the best of friends, but they do get along now. My son taught me a lesson through his kindness: Yes, everyone deserves a friend. Or a safe place. After seeing how truly happy my son is, the boy who was bullying him wanted a part of that, too. Not everyone can make amends with their bully, but sometimes being the bigger person helps. Brock could have told him, “No, you can’t play with me,” and that would’ve been understandable. Instead, he took the high road and extended a branch.

Everyone has a story, and we don’t always know what goes on behind closed doors. But we can put aside our differences and be there for someone who really needs it. Even when we don’t want to be.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. 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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How Watching My Mother Slip Into Depression Helped Me Face My Own

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I’ve heard people say depression is a phase everyone goes through.

For my mother, it was a life-long ordeal. She tried to hide it. She tried to pretend it wasn’t there. She tried to shut off the idea she even had it. For a while she thrived, but then she was triggered. For her, this meant her hard work at fighting off the fog meant nothing, and the darkness of depression returned. She sank back into her shell as if the light at the end of the tunnel had faded. She lived there, in the darkness, and it seemed like there was no way out. 

But my mother fought a decent fight for a long time.

She built a life, a family and a home with my father.

For a while, she thrived in her career and as a wife and mother.

She refused to accept the darkness would return.

But when it did, she wasn’t ready. She fell deep into herself, never to return. It was her mother’s death that did it. Even with family around her, she never found her way back out of it.

I was triggered into depression my late adolescent years, then again in my early teens, then again in my late teens, but I fought it. I knew I could beat it if I could just make myself healthy. I knew I wouldn’t go down the same dark path as her. I tried everything. I wrote poetry and stories. I exercised. I sang. I tried yoga and paintball, took up more new hobbies and spoke to counselors, close friends and family. I pushed, pushed, pushed the depression away as hard as I could. I saw myself as strong and capable conquering everything.

By the fourth time I was triggered into depression, my mother was out on mental disability. We weren’t speaking, but my brother told me she was suicidal and hospitalized for her anxiety and depression more than once. Her entire life had turned upside down, and the life and love that had once surrounded her had depleted, leaving her alone and drowning in her sadness. Looking at my mother and how she ended up, I was absolutely terrified.

So by the fourth time I was triggered, I realized if I didn’t do something to fight off my depression for good, I’d be fighting this exhausting fight for the rest of my life. It wasn’t just me being sad or “going through a phase.” This fight was biological and hereditary, and there wasn’t enough serotonin in my brain to keep me consistently happy forever. I didn’t want to follow the same path I watched my mother go down.

Carrying the knowledge I had tried all I could, I went to a doctor.

But I didn’t just go for me.

I went for the woman who lost everything to this horrible disease. Who pushed her husband to divorce and alienated both her children in her pain, rendering her completely alone.

But most of all, I went for the little girl who lost her mother, who didn’t understand it wasn’t her fault and who kept quiet because she didn’t want anyone else to feel her pain. 

Today, I’m not keeping quiet. It’s been about two weeks since I took that big step to get the medication I need to keep the darkness away permanently.

With help, I learned to live again. I realized I’d been missing out on so much in life. The fog cleared, and my perspective on how happiness could be obtained and kept was a feeling I never imagined I’d have.

I also learned depression is not anyone’s fault, but a biological and chemical error that sometimes we can’t fix on our own.

We’re often taught depression is just a phase or something we should be ashamed of, but it’s not. Only when we speak up about it can we get the help we all completely deserve.

Follow this journey on The Moments In Between.

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