Inspiring Video Offers New Way to View People With Autism

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Autism Spectrum Australia has launched a campaign asking the world to see people with autism spectrum disorder not as different, but as a different type of brilliant.

The organization released the video below yesterday in the hopes that it will spur more positive dialogue around the disorder, according to SBS News.

So often wonderfully talented, brilliant people with autism spectrum disorder are overlooked by society as being odd or quirky or obsessive,” Adrian Ford, CEO of Autism Spectrum Australia, told the outlet. “With our a ‘Different Brilliant’ campaign, we hope to inspire a wider understanding and respect for how people on the autism spectrum are just like you and me, in many ways, but with their own uniquely brilliant take on the world.”

The powerful 90-second film features people on the spectrum and offers a message of acceptance and inspiration.

Enjoy the video below: 

 

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Why I Don't Have the Luxury of Anger

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You don’t get the luxury of anger as a parent. Anger feeds chaos and disorganization and hate. I don’t get to be angry because my son, Kreed, does this or that or doesn’t do this or that. When I’m angry, it solves nothing. Angry wastes my time. It’s unproductive. It doesn’t make me happier.

It takes away joy. It takes away happiness. It sucks the life out of everything. When I rage in anger at any of my children, inevitably it makes the situation worse. Kreed doesn’t know better. Even if he does, he can’t always comprehend his consequences and his brother, who has Asperger’s, is still unable to see longterm consequences.

I want to be angry at so much. Most people don’t ever hear me talk about this. I’m patient, I’m kind, I teach. I’m that way because I don’t spend a lot of time in anger or wondering what if. As Kreed has taught me to live in the now, it lessens the anger — all I see is what is in front of us right now, and I have to deal with it.

Sure, some people can be angry that then I don’t have these super huge dreams for the future. But why? I can’t predict the future. I can’t change the past. I have my present. I can improve my situation from the past, and I can plan for the future. So I figure it’s win-win.

I could rage against life on how unfair it is to Kreed. I could rage about how I wish our life could be different — that if things had gone differently, he would be driving or dating or thinking about college. But why? It’s not our present. It’s not our life. My life is giving Kreed the happiest life possible and to always, always teach him so he will continue to interact with his environment and people in the way he wants. That’s our life together. I can’t separate my life from his to any meaningful degree because we’re connected on levels most people would never understand.

Can I go out and have fun while he enjoys his respite time? Absolutely. I can leave Kreed for various lengths of time to have a life outside of him. But life is always circular, and after those brief moments of time, everything comes back to how it is daily.

A lot of people fight in the autism world. Some fight against the diagnosis. Some fight about the language of autism. Some fight about the spectrum of autism. Some fight about blessings and curses and vaccines and therapies. At the end of the day you will not see me engage in any of this. Why? It has no bearing on my life with Kreed. It doesn’t matter anymore what started Kreed down this path, only the progression. I don’t care what celebrity has this or that because they don’t live in our life or help in any way. I don’t fight about therapy because Kreed is 17 and we know what works and what doesn’t, and I don’t care if other people do the same or not — our kids aren’t the same. I don’t have the luxury of anger in our life for our actual life so I certainly don’t have the luxury of anger for things that have zero bearing on our life. I’m too busy immersed in the life every day, 24/7 to give a care about what anyone else is doing or how they feel about some celebrity who may or may not be on the spectrum.

I don’t have the luxury of imagining a life that’s different or better. The life is how it is. Whether it’s helping Kreed succeed in communication or his brother to succeed in being independent — they’re the children that were brought into this world with the promise they would be loved unconditionally and supported to fulfill their dreams. It doesn’t matter if autism entered the picture or Asperger’s or Kreed’s thousands of medical issues. It just is. I can’t change it, but I can make things better. 

Some nights I might cry. Some nights I might yell. I’m only human. Some nights I feel numbed out. Caring for Kreed is a 24-hour-a-day, seven-days-a-week job. For life. Some days things go easy. Other days he rages without cause, and I just keep him safe. I always try to figure it out. The more I figure out and teach him, the better he is in the long run. I don’t get angry for long because time is too short and precious for that. 

Then I would miss moments like these:

mom and son hugging

Other nights I write blogs like this because I have to find meaning in our life and existence when it seems there’s too much rage and poop or pee or nakedness or days and days of sameness. But it’s not about the moments that make me angry. It’s about the moments that make me happy and him happy.

And I know in the end, our life is enmeshed and for whatever reason we’re working hard to show the world Kreed and what we do to help him be successful. We’re working hard to do what people didn’t think was possible and for people to understand that our kids have no limits. The more I can help Kreed handle his emotions, learn to communicate and enjoy his time out in public, the better our life is over all — this is just fact. So I get up each day anew and strive to make it better than the day before. If I was angry yesterday, I try to find more joy in the new day.

Or I write. I write and I keep it real. I write and I get my feelings out. I write our truth. No one else’s. Just ours. Maybe other people can find commonalities. Or maybe you just love Kreed’s dimples so you read about our journey. But at the end of the day, it’s our truth. Nothing more, nothing less. I will never be pulled into these endless stories that appear in my newsfeed because it’s not part out our truth. At this point in our life, our truth is all I can handle.

And for the boys affected and struggling, I don’t have the luxury of anger because at the end of the day it solves nothing for us. And we need solutions and learning and teaching and happiness and joy. That is our truth.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

This post originally appeared on Kreed’s World.

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To the Classmates Who Sign Up to Sit With My Son at Lunch

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My son Tate has autism. He’s 13 and in the seventh grade. Tate performs at a grade level far below his peers, academically and socially. I could and should write thank you notes often to each and every one of the teachers and staff involved in Tate’s individualized education. I definitely don’t say it enough. Today, however, I am going to say “Thank you” to the seventh grade class at Baldwin City Junior High School.

There are advantages to living in a small town sometimes. Tate will graduate with a class of approximately 100 students — he began kindergarten with about 20 of them. He had the same kids in his class through third grade. And living in a small town has produced opportunities for us that many families of a special needs child wouldn’t have. I knew all of Tate’s teachers and many of the parents and children. I was often in the classroom and able to educate Tate’s classmates about autism and Tate’s differences. I wanted full disclosure and often asked that the privacy policy be ignored. I talked openly about Tate’s disability and urged teachers to do the same.

From the beginning Tate’s been treated with respect and kindness. His classmates could see he needed help with many things, and there were always lots of willing helpers available. At the end of their first grade year, I thanked the children for being such good friends to Tate and asked them to promise me they would be friends all the way through high school — they’ve kept their promise thus far.

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For five years Tate has had a lunch buddy program so he can receive social instruction from an adult coach while surrounded by peers. In elementary school, students had a chance to sign up to be a part of it with their parents’ permission. There was always a waiting list and never a lack of enthusiasm for eating lunch with Tate. The program has evolved somewhat. Now, for part of the week, Tate sits at a table with peers and no adult. Other days he invites a friend or two to eat with him and a teacher at a smaller table so he can work on social skills. Rarely does a student ask for a rain check. If Tate calls, they answer!

So many children with special needs have to worry about bullies. So many children with special needs are lonely or forgotten. Tate has never been bullied — not even once that I am aware of — and many of his peers call him “friend,” although Tate doesn’t often reciprocate their kindnesses. Tate’s understanding of social skills and reciprocity is greatly lacking. His peers know it, and they accept it. They give, asking nothing in return. They include Tate whenever possible. They help him with tasks that are difficult for him. They teach him and encourage him. They make him feel like one of “the guys.” It doesn’t matter that he comes in last in all the races. I’ve heard them cheer as if he’s crossed the finish line in record time! It doesn’t matter if his presentation is short and simple compared to theirs; they’re excited to see Tate’s achievements even when they’re small.

They treat Tate like he’s a valued member of their class, an equal. For this, I thank them. I thank these students for being kind to Tate and for making his life easier. I thank these students for making my life easier. I don’t have to worry or wonder about Tate while he’s at school because he has friends who look out for him. Thank You Baldwin Bulldogs, class of 2020.

The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a 400- to 800-word thank you note along with a photo and 1-2 sentence bio to [email protected].

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When My Son With Autism Locked Me Out of the House

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[Writer’s note: This is one of the first full essays I wrote about my kid. It’s an old story from ten years back now and is still one of my favorite memories.]

Standing on my back patio, I watch my 5-year-old son through the sliding glass door. He bounces around the kitchen on his large blue exercise ball, happily unaware that he’s just locked his mother out of the house.

boy sitting on ball

 He didn’t mean to lock me out. I stepped out — just for a moment — to throw something away, and I left the door open. After I went around the corner of the house, my son simply returned the door to its normal state: closed, with the latch pointed down. That’s how the handle always looks from the inside. Like many other autistic people, my child exhibits a keen awareness of his surroundings and tends to fix things he deems out of place. Lights on that should be off, books rearranged on shelves, doors that must be closed and latches returned to their down and locked positions.

“Unlock the door, hon,” I say, shaking the handle. He rolls his ball over to the door and presses his palms against the glass. He grins at me and sits back down on his ball. I instruct him: “Pull up,” and mime lifting the latch. He slides off the ball and copies my hand motions in the air, his fingers hovering inches from the handle.

“OPEN DOOR,” I demand, failing in my attempt to keep the growing worry out of my voice. My son laughs and repeats, “Open door!” But he doesn’t understand.

It all comes down to this — all the hours of behavioral and speech therapy, doctors’ appointments, IEP meetings and filing cabinets full of data sheets and treatment goals. If my son founders on a simple instruction to unlock the door, what does it matter if he knows his colors, his shapes, if he can recite the alphabet forwards and backwards? What does it matter if he expands his limited verbal ability to place “I want” before a request for juice or a cookie if he fails to comprehend my words when danger looms?

I run across the street to my neighbor’s house to call my sister-in-law, the only person with a spare key since my husband is out of town. Her phone goes to voicemail. I race back home, convinced my son is either upset by my absence or getting himself into some kind of trouble. I find him perfectly content in the air-conditioned house, bouncing on his ball near the kitchen table, taking bites of his lunch. Dear God, please don’t choke.

I go back to my neighbor’s house to call a locksmith, cursing myself for not hiding a key outside. The locksmith estimates his arrival at 20 minutes. How many things can go wrong in 20 minutes?

I return to my patio to wait where I can watch my kid behind glass, trying every so often to get him to let me in. From my isolated vantage point, the newly exposed hazards of my once-child-safe kitchen mock me. I begin to strategize. Which window will I break if he grabs that sharp knife off the counter or if he climbs up on the still-warm stove? Can I throw this metal patio chair hard enough to break the glass if he falls off that damned ball and cracks his head on the hard tile floor? Oblivious to the threats that surround him, my son laughs and bounces and taps on the glass between us.

Just as I reassure myself that at least I can keep an eye on him, my kid leaves the room. He runs into my bedroom where, of course, the window shades block my view. I cannot see him, but I hear him jumping on the bed, a favorite pastime that I instantly redefine as reckless. He yells, “Jumponthebed!”— one of the rare times he calls for me to play. I stand helpless to respond.

Then it happens. My son reappears, running into the kitchen and over to me at the door. He pulls on the handle, notices the latch and — without hesitation — flips it up and slides the door open. I’m stunned by the speed at which my dilemma evaporates. My kid, in turn, looks bewildered by his mother’s enthusiastic and borderline hysterical response. I cry and hug and sigh and he just smiles, as if to say: It’s about time, Mom, what were you doing outside for so long?

It is not always about ability. More often it’s about motivation. My child could easily learn how to unlock the door; he just needed a reason. People with autism spectrum disorders sometimes find it difficult to see the world from another’s perspective — my need to get inside, to get past that locked door, didn’t concern my son. Until it became his need.

Years later, this experience still shapes my interactions with my child. Of course, we moved the goal of teaching the instruction “unlock” to the top of the priority list (and yes, we now hide a spare key). But, the most important thing I can do is to give my son ample reason and motivation to use and strengthen his abilities; to discover what will entice him to open the doors that stand between us, waiting to be unlocked.

This post originally appeared on Stay Quirky, My Friends.

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To All the People We Underestimated Throughout Our Son's Autism Journey

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Since my son, TJ, was diagnosed with autism at age 2, our family has been immersed in paperwork, education plans and an entirely new language filled with terms and abbreviations that would make your head spin.

They certainly made ours.

And if it weren’t for our team leaders, we would have been lost.

The earliest team leaders laid the groundwork for us. When we were blindsided by the fact that our precious boy needed help, they held our hands and helped us out of the fog. They set up all the appointments for diagnosis. They tirelessly explained terms over and over again until they made sense. They set us up with the right people to give TJ the best chance at success.

Then we were passed to the preschool team and a new leader. She’d already been working with TJ, which made the transition seamless. That team gave TJ the most positive beginning to what it meant to go to school.

We’ve since been passed from team to team as TJ has grown. Each time we thought, “There’s no way our new team leader can replace our last one.”

Each time we were proven wrong.

So to every team leader we’ve had who made us feel like we were being heard, who worked out problems with a smile, who spent hours behind the scenes doing paperwork for our boy, we want to say a huge thank you.

To Liz, Laurie, Kristeen, Nicky, Sue, Donna, Alda and Shawn, we’re forever grateful.

Thank you for always being available and for responding to voice messages and emails so quickly.

Thank you for always saying, “There are no stupid questions.”

Thank you for reminding us that when TJ shows signs of regression, it usually means a leap forward is soon to come.

Thank you for your guidance through this crazy maze called autism.

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Why I'm Going to Keep Talking to My Son, Even When He Doesn't Respond

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He remembers the paths we walked last year along the beach and across the cliff-top fields toward the seal rookery. I let him lead. We never get lost.

Each day, he speeds down the beach, twirling two rubber snakes in his hands. I stop trying to keep up but instead hold back to see how far he will really get before he notices I’m not with him. He goes and goes and goes. Do I need to run? No, now he stops. He finds me with his eyes, far back along the beach. He turns back. He never comes all the way to me but just enough so that we are close, walking on together again in the same direction.

I spy a tiny speck of red and black crawling up the sand, and I pick it up to show him. He labels it quickly – ladybug – apparently unimpressed, and moves on.

While he’s close, I point out the dolphins who have arrived again just offshore, their dorsal fins cresting the waves in twos and threes every few yards. I can’t tell if he looks out long enough to see them.

Two rubber snakes spin over every surface along the beach, the road and back at our oceanside apartment.

He declines to come near enough to the surf to see the huge crab claw washed ashore, looking unnatural, as if someone on a dinner cruise tossed the carcass overboard after dipping the meat in melted butter.

My child – who swam nonstop in the freezing water every year before this – won’t go near the waves this time. As we saw before his first surfing experience last summer, he’s uncharacteristically hesitant and unsure at the water’s edge. He still loves to run on the beach, chase seagulls, walk and walk and walk – but he won’t get his feet wet.

seagulls

I reassure him that no one will force him – he can return to the water whenever he’s ready. Although I don’t know why he’s had a change of heart, I hope he will love to swim in the ocean again in time. He says nothing until after our trip when we are back home, looking at photos. Then, a song emerges quietly: People swimming in the water, people swimming in the water… shark coming in the water, shark coming in the water…

My son can’t always find the words at the right time, and when the language does come, it is often coded, masked, singular. In order to hear him, I have to take the time to listen. He is speaking to me, in his way.

This break gave me time to practice this listening, to slow down and just be with my son, follow his lead and see where he takes me. It helped me notice what I am often missing in our busy, hurried life – that he is throwing me little sparkling clues to what he is thinking.

Within his daily babble – streaming scenes from his movies or books or games – I begin to hear small words that don’t fit in the script but align perfectly to the situation at hand.  When my mother joins us one morning, I hear the word “grandpa” sneak into his rambling soundscape, and I guess he is wondering where my father is.  With his question acknowledged, he is visibly happy to have been heard. This pattern repeats in other situations – I start to listen more closely to everything we believed was only “verbal stimming” before. Is his awareness and connection stronger this week, or am I just now slowing down enough to hear it?

On the beach, I catch sight of a seal bobbing in the waves just beyond where the boogie boarders float. He disappears and reemerges several times before the swimmers notice he is there. When they finally see him, their attention is newly focused, their experience made brighter, more memorable.  All they can do is watch and wait, let him choose to be near them – if they try to approach or chase after him, he’d be gone.

Each time I hear my child express what’s on his mind – in clips of song or a re-engineered phrase – I catch a fleeting glimpse of all that is just below the surface. In my eagerness, I tend to jump at it too soon, too forcefully, and the silence returns. But if I stay still, listen – float – his words appear.

I returned from vacation recharged to cultivate the patience I need to support my son’s still-emerging voice and to encourage his trust in me as a communication partner. As much as I yearn to know what my son is thinking right now, to have a conversation with him, to ensure that he will be safe and understood when he is away from me, none of these skills come quickly.

It is hard and treacherous work to find the words, and it may take years for him to know the rewards of shared communication. I am finally beginning to understand that just because his voice is not fully here yet doesn’t mean it will never come. If I can just slow down to listen, I can catch glimpses right now.

I will walk the beach with him, following his lead. I will point out what I see, despite his lack of response, hoping he’s soaking in the language he can retrieve later. When he’s ready to look back, I will be here, believing that he understands and desires to know more even if he can’t yet form the questions. I will wait and watch for the creative ways he is communicating – now or in the hours or days later. I will offer what he needs to build his voice: more patience, more time, more assurances that someone will hear him.

sunset

This post originally appeared on Stay Quirky, My Friends.

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