The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list.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 Submit a Story page for more about our submission guidelines.
How could I do that when we live in a world in which people’s opinions differ so vastly, and their past experiences shape how they interact with him? How could I understand how he feels and help him make sense of this world, and help others see who he really is?
Simple… I had to change the way I viewed my son’s world. The ups and downs, the highs and lows, and the challenges he faces daily. Not to mention the inner strength and talents he has within. I had to change my perspective and try to step into his shoes to see the world as he sees it.
You see, people may think he just chooses not to leave the house and is a “recluse.” But imagine a world in which complex interactions and going beyond the safety of home floods you with all-consuming anxiety that can make you feel physically sick. Now can you understand why stepping outside is so daunting for him sometimes?
People may think he doesn’t understand what they are saying, so they talk over him or ignore him completely. However, try to imagine how it feels to struggle following the ebb and flow of conversations. Not knowing how and when you are meant to respond, or what people’s facial expressions actually mean. I feel it’s no wonder he avoids conversations with people who don’t know him very well.
People may think he has no sense of humor or can’t take a joke. But instead, try to imagine living in a world where people say things they don’t really mean and make jokes about things that just don’t make sense. It’s not that he doesn’t have a sense of humor, he is really funny and makes people laugh every day. In fact I say he has a giggle that is infectious.
People may think he wants to control things. For a second, just picture how it feels to not be able to predict what is going to happen next, and how out of control this would make you feel. And maybe then you will realize why he feels the need for control or routine.
He may have difficulty seeing the bigger picture of what’s happening around him and seem like he is in his own world, and people might think he is ignoring them. Just rememberthat his world is rich and full of intense experiences. He sees and feels things so vividly that sometimes it can be hard for him to switch his focus to anything else.
Sometimes people think he is rude or that he doesn’t care about other people’s feelings. Try and keep in your mind that people’s rules can seem unwritten, confusing and mysterious. Imagine not being able to understand how other people feel, what they could be thinking or even that they are giving clues about their emotions through their body language. It’s not that he doesn’t care, he just doesn’t experience emotions like you do.
How would you feel if you had a really creative mind full of amazing ideas but no one recognized your potential just because you didn’t have the words?
How would you feel if you had so much love to give, but people didn’t know because they didn’t enter your world to feel it for themselves?
How would you feel if you could see the beauty in the things other people might ignore and people dismissed the things you were passionate about?
How would you feel if people wanted to change you, and said that the things you like to do weren’t socially acceptable?
How would you feel living in a world that doesn’t recognize the potential that lies within you because of a label?
Just for a minute, put yourself in his shoes! How frustrating must it all be at times for him?
If people don’t learn to see things from a different perspective, my son’s perspective, then they may never see the wonderful talents that lie within him. They may never see beyond the challenges and labels he faces, to view what he has to offer the world.
And this is why I do what I do. This is why I fight so hard to raise awareness, understanding and acceptance. No matter what day or month it is. Because autism is part of who he is, but not all he is.
I want to open the window of perspective and blow away the cobwebs of ignorance, so my son can hopefully live in a world that is far less confusing, much more aware, and has a greater level of acceptance than ever before.
The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. 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 Submit a Story page for more about our submission guidelines.
The video is shot from Alexander’s point of view during a trip to the mall. From noises to smells to bright lights, it shows all the things that might cause Alexander, who was diagnosed with autism two years ago, to have a meltdown.
After a number of triggering visuals and sounds, Alexander is unable to maintain his composure in the video. People pass by and give Alexander and his mother dirty looks as she tries to calm him down. “I’m not naughty, I’m autistic,” Alexander says at the end of the clip. “And I just get too much information.”
“When there are a lot of people barging past me, more often than not I will break down,” Alexander told The Guardian. “If I’m at home I would go to my bedroom, but if I’m in a public space I might just break down.”
“We’d love people to realize that he just can’t help it,” Alexander’s father, Ben Marshall, added during the family’s interview with the U.K. publication. “Judgmental looks and comments stop us being able to focus on Alex. He isn’t being naughty, he genuinely can’t help it.”
The National Autistic Society also released a behind-the-scenes video from the Too Much Information shoot, explaining how they cast Alexander and what those in the autism community wanted the campaign video to show.
“The alarms, the TVs, the stares you get from the public, even the sound of a plastic bag — these are things that autistic people told us they have to endure on a simple trip to the shopping center,” Mark Lever, Chief Executive of The National Autistic Society, said in the behind-the-scenes video.
“We want people to see the looks and stares Alexander and his mom get on a shopping trip and perhaps ask themselves, have they done that before in a particular situation?” Lever added. “And maybe after having seen the film, they might react differently in the future. Then in doing so, they really will have made a world of difference.”
Hope. Only four letters, certainly not a long word — but a big word.
Wikipedia defines hope as “an optimistic attitude of mind based on an expectation of positive outcomes related to events and circumstances in one’s life or the world at large.” Like most of what she wrote, Emily Dickinson’s definition of hope is much prettier. Miss Dickinson gives hope wings:”Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all.”
April is Autism Awareness Month, and there will be stories of hope and feathers everywhere you turn. From families of recently diagnosed children who are struggling to find the feathers in their souls to parents of adult children who found their feathers decades ago. Some days, as parents we experience more molting of our feathers than we like, which makes us feel exposed and vulnerable, but, in time the old feathers are replaced with new ones and our ability to hear the tune of our feathers returns.
Since the first moment I knew it was autism, I felt the feathers perch in my soul. At first the feathers were small as I had to grieve and accept that what I once hoped for him may change. I had a hard time feeling the feathers back then. As time passed, the feathers grew, and I clung to each and every feather that perched in my soul — for without the feathers, the only alternative was falling and crashing as I let go of hope. As one milestone after another passed him by, at first I would crash, but in time I felt the tickle of hope that one day perhaps, he would catch up. With every feather that fell away, a new one took its place helping me to hear the tune again.
When I would beg him to “look at me” I felt the feathers tickle my soul as I occasionally caught a glimpse of his eyes and saw his own hope reflecting back in my own. Ryan’s feathers tickled his soul hoping one day I would understand that he can see me and hear me, even if he is not looking at me. Ryan clung to the hope that I would hear the unique and beautiful tune his soul was playing while drowning out the tune I always expected to hear. Some days I listened more than others.
In those early days, the feathers that perched in my soul were small, thus the tune they played was quiet. Over time though, the feathers grew and the tune got louder. I began to feel and hear hope more frequently. Hope was found in an unexpected hug, a beautifully written essay, a song being sung from the shower and communication through scripts that brought him joy. Yes, I swear I felt the feathers grow.
Hope is a powerful word, and without it, Ryan would never be where he is today. It was hope that caused me to push, nag and prod him along. Not hoping for change, not hoping for him to be someone else, just hoping for him to be the best him he could be. And for me to accept that the best him, the perfect him, was better than the him I once imagined all those featherless years ago.
Decades ago, mothers were told there was no hope; not even the tiniest feather could be felt awakening their soul. They were told to institutionalize, give up, move on, stripping them of their feathers and muting the tune their soul was so desperately trying to play. Without hope, there were no feathers, there was no tune, there was no “optimistic attitude of mind;” there was just despair and hopelessness. My heart aches for the parents whose feathers were stripped away by those who thought hope was a waste of time.
Today, when I share stories of Ryan’s progress, of how far he has come, I write stories of hope, I share the gift of feathers. People tell me, “Ryan gives me hope for my son/daughter.” I love that, but at the same time it concerns me. I worry I may give “false hope” — false feathers, as each autistic individual is different, but then I question… is there such a thing as false hope?Who wants to live without hope?Without feathers perching in your soul and singing a tune? Sure, the tune is different for my child than yours, but we still need to find the feathers that enable us to hear the tune in the first place.
If I stop sharing my feathers then I am no better than the so called “experts” who stripped away the feathers of all those mothers years ago. So I will continue to share my feathers, my hope, my tune because just like birds cannot fly without feathers, dreams and hope cannot either. Although I am no Emily Dickinson and my words will not span into the next century, for parents loving a child with autism, I’d like to think in this century, in this moment, I too give hope wings.
Hope is necessary. Hope is needed. Hope is real. Hold onto it. Feel the feathers inside you, inside him. They are there. Your child is trying so hard to fly, and he wants you to fly with him and hear his beautiful tune even if the tune sounds different than anything you ever expected to hear. The tune is beautiful, and with or without the words, you can hear it, but you have to listen, you have to hope so the tune for both of you “never stops at all.”
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.
It took me a while to be able to say the words “My daughter is autistic.” For a while, even when I said them to myself, they sat like lead on my tongue. When they did come out, it sounded like a stranger’s voice or an awkward attempt at speaking a foreign language.
It took even longer for me to be able to use those words in everyday conversation. Piper had a diagnosis for months before I even hinted at it on social media. Beyond a small group of friends and immediate family, the information was on a need-to-know basis. This wasn’t because I was ashamed or sad; it was more of a motherly attempt to protect her. What I feared the most was that once those words were out there, people wouldn’t see “Piper” anymore. They’d see a preconceived notion of autism first.
After a while, I realized saying those words wouldn’t change how my friends looked at Piper. I realized if they did, then perhaps friendships would be reevaluated and the circle would get a little smaller. When I finally decided to share, I did so casually and received a warm, genuinely supportive response –the kind you would expect to receive from true friends.
What you can’t predict, however, is the response you’ll get from strangers or acquaintances. The worst of which is simply, “I’m sorry.”
“I’m sorry” is something you say to someone when they’ve experienced a loss. Nothing about my child being autistic is a loss to me. The day she was given her diagnosis, we didn’t lose a “normal” child. To the contrary, we gained so much! We gained affirmation that there was a solid reason for her delays. We gained a therapy plan. We gained an incredible support system in the autism community, and most of all, we gained insight and perspective into our child’s beautiful mind.
I won’t be angry with you if you respond with “I’m sorry” because I realize the intention is not a negative one. Most of the time, it’s just a knee-jerk reaction. Perhaps what you were trying to say is that you are sorry we’re dealing with so much, right now. Please, don’t feel that way. It may be overwhelming at times, but I’m not sorry.
When I say the words, “My daughter has autism” and you respond by saying “I’m sorry,” please know it does make me sad. It hurts me that you might think I view my daughter’s diagnosis as a burden. It is not. To the contrary, the countless appointments and therapy sessions over the past several months have been a blessing. They have given me extra time to bond with a pretty amazing person!
Don’t be sorry for me, for there is no reason. In this situation, I am sorry for you. I’m sorry you don’t know her like I do.
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 [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Today Legoland Florida announced they are partnering with Autism Speaks to make the amusement park and resort in Winter Haven, Florida, a more sensory-friendly place for children on the spectrum.
The park is currently installing “a large panel of hands-on, sensory-stimulating activities in a quiet space,” according to a blog post on the Legoland Florida website. The park will also have designated “quiet rooms,” online illustrations of park attractions so parents can plan ahead, and park maps will be designed specifically for guests with special needs.
Park employees will receive bi-annual training with Autism Speaks staff and volunteers, and new hires will receive educational material about autism, reported the Orlando Sentinel.
“Autism Speaks applauds the efforts of Legoland Florida Resort to provide special accommodations so that guests on the autism spectrum can maximize their park experience,” Karen Bacharach, senior director of Autism Speaks, told The Mighty.
“We’re helping ensure that our resort is truly built for all kids,” Rex Jackson, the resort’s director of marketing & sales, told the Orlando Sentinel.
In addition to that, in honor of World Autism Awareness Day on April 2, the park will be participating in the “Light It Up Blue” campaign by shining blue spotlights on their entrance arch.