Tag Archives: April 30

Autism: Unique is Awesome – Expressions of PosAutivity: #AutismPositivity2014

By Katrina Moody

Let’s Mold Different Perceptions of Autism and Autistic People

Autism Acceptance - because Different is Beautiful When Suzanne Wright penned her opinion piece for Autism Speaks last November, she didn’t inspire me to action, she didn’t help anyone understand the spectrum of Autism, she didn’t help autistic people (adults or children) feel valued and respected.

If you haven’t read the letter you can Google for it, I refuse to link to it. I know there are some parents who feel Autism Speaks really does speak for them and their experience in dealing with autism. But after seeing her words literally call my kids a tragedy, imply that they are missing, imply my kids and others who happen to be autistic are singlehandedly destroying their families, their parent’s marriages …

I was convinced that someone somewhere at that organization had lost touch with the Autism I know and love. And they don’t know the autistic folks I know – because the adults and children I know, including the ones I adore and love and call my own – they are amazing, beautiful and unique people.

Respect our Differences – even our Differences in Opinion

I found, over the weeks and months that followed, that I was increasingly sensitive to the negativity, the almost dehumanization, that seems to accompany some forms of autism awareness. Even some parents would use words to describe their experience that made me flinch. Maybe they were having a bad day, or they were just at a different point in their journey, but it made me increasingly uncomfortable.

Why was I so sensitive?

Not because their experience of feeling overwhelmed was wrong … it’s not about being right or wrong … it’s because the negativity was becoming harder for me to deal with. I actually wrote a friend in a panic wondering if something was wrong with me. I found myself upset by these posts because they seemed to be all I was reading.

Let me reiterate that there’s NOTHING wrong with parents venting and dealing with their experience in their own way. And sometimes I vent too …  BUT I follow a few rules …

Our Rules of Posting:

  1. I don’t share deeply personal things in a public forum  –  when I post something or ask for prayer I won’t always include all the details (sometimes even friends-only can end up letting a LOT of folks see that private post).
  2. If I share something about my husband or my kids publicly, I ask myself if they would mind having it out there. And if I can, I ask them (Bobby and Andy always have final veto power over what I publish, and while Logan isn’t able to verbalize his wants yet, my goal is to share with respect foremost in mind).
  3. I’m careful of details I put in groups, too – Facebook Groups (and most groups and forums online, honestly) come with three different levels — Open, Closed, and Secret. You must assume ANYONE can see something if you post it in an open group, and should assume your own risk in other groups. Trust the people in the group before you share to even a secret group, because once it’s out there, it’s out there.
  4. Ask yourself this: Do you need to vent? Could it hurt my child’s feelings? Could it embarrass them unduly?
  5. There’s more but that’s the biggest part of my own internal checklist (please leave your suggestions in the comments!). There are safe places to vent, and there are safe places to go if you need help, or if you are in crisis. Please reach out to me if you need to hook up with any of those or if you just need an ear…

Read more at: http://katscafe.org/autism-unique-awesome

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The Rev’s Family Expressions of PosAutivity: #AutismPositivity2014

By Amy Robinson

2e0db-screen-shot-2014-04-21-at-6-45-04-pmLanguage is not Abigail’s first language. She is doing ever so well at it, but it doesn’t come naturally. She speaks, as TheRev puts it, like somebody using a phrase book: echoes from television, bedtime stories and overheard conversation are all stored in her extraordinary library of a mind, where they are broken down, mixed up and carefully chosen for use in every conversation. She takes comfort in scripts and songs which are the same every time.

She started to learn language in echoes of full sentences and phrases. If she’s learned that a phrase is an acceptable answer to a question (because it was true the first time) then it becomes the answer to that question every time: for a while, the answer to the question “Why is s/he crying” was always “Because my hitted him” even if it was a character in a book! Sometimes, a word selection accidentally triggers an echo, meaning that her reply to your question isn’t at all what she meant to say. Sometimes she accidentally does it to herself: “I’m going to turn the page” she announced to me, before turning off the light.

The way she listens and speaks may make communication difficult sometimes, but at other times it’s like living with a tiny unintentional poet, a walking box of connections and combinations all sparking and hissing and flashing at once.

Rather than try to describe it any further, I’m going to make a list of quotations from my journal that will hopefully give you some idea, both of how incredibly quickly she’s learning, and of the amazing things that can by done with words by a child for whom language is not her first language.

30/05/13
Tiffer says, in conversation, that he thinks something is less important. Abi shouts: “It’s not less important, it’s FULL OF PORRIDGE!”

2/10/13 Abi’s response to being asked what she did at nursery today: “I just played happily. Then I done a song about the sleeping butterflies. I think butterflies do sleep on something, it’s just a pillow and a blanket and all the way back to bed, and then they go in a wirrelbarrel all the way home”.

15/10/13
“I have an idea, how about we can play instead? It’s playtime, that why we can play, and the time is play.” (Actually, it was bedtime!)

29/10/13
Abi’s response to my reaction upon discovering that she had drawn in orange highlighter on our hosts’ pillowcase: “Don’t worry Mummy. It’s not the matter. It’s GREAT!”

25/11/13
Me: Abi, we need to change your trousers, those are too small.
Her: No, those are too fine, they are just my same.

25/01/14
Abi is very interested that I am eating chocolate. “Have you beened a GOOD Mummy?”

11/02/14
Me: What does an angel say, Abi? (This is a script that we’ve been doing together since before Christmas, and the answer has always been “Don’t be afraid, I’ve got good news for you”, which comes from a favourite Christmas song on video).
Her: Don’t be afraid. I got something in my pocket to good news you.

19/03/14
Mummy, are you feeling better, or are you properly poorly?

1/04/14
Me: Abi, please put that magazine into my bag now.
Her: No, I won’t do that. Putting in bags is not good for magazines.

________________

Original post at: http://therevsfamily.blogspot.co.uk/2014/04/the-revs-family-expressions-of.html

 

 

 

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FRANKENWEENIE: Sparking Connections #AutismPositivity2014

By Antonia Lidder

2e0db-screen-shot-2014-04-21-at-6-45-04-pmWhen your child is diagnosed with autism, it can feel like your world has fallen apart. Last year, when our son Gabriel was three, it happened to us. And though life is extremely hard for us, and much more so for him, he has opened our eyes, minds and souls to magical things in everyday life – like cinema.

Our son is essentially non-verbal, having very few words, and like many with autism he has major difficulties with language, communication and social interaction. We first took him to the cinema when he was two, and a passion was born. In the darkness of the theatre there’s no threat or pressure from neurotypical folk expecting conversation and eye contact. The two-dimensional characters provide a safe way of accessing life experiences: our son can’t seek answers and information as others would by asking questions and sharing fears. The darkness and ‘front focus’ help reduce the constant overwhelming visual input that is part of his life: how can you attend to the ‘thing’ in front of you when your eyes are flooded with hundreds of images every minute from every nook of peripheral vision?

In spring 2012, when he had a vocabulary of approximately 15 words, Gabriel clearly said ‘Sparky’. We were excited that he’d said a word and was undoubtedly trying to communicate with us, yet we had no idea what ‘sparky’ was. We searched our memories and came up blank. Then one day I recalled, ‘Last month we did see a trailer for a Tim Burton film – there was a dog in it called Sparky, but it’s only mentioned a couple of times, and it was so fast, and we’ve only seen it once…’

‘Nah,’ my husband said, ‘can’t be.’

How much we have learnt since.

That one trailer was to seize Gabriel’s imagination like no other. How did we discover that ‘Sparky’ was indeed the endearing dog of Burton’s creation? Gabriel showed us. We went to the cinema and Gabriel ran to a cardboard FRANKENWEENIE placard and spent 45 minutes dancing, babbling, singsonging and beaming in front of it. Over several months we hotly anticipated the release of the film. With every poster, every Disney Store window display, Gabriel turned to us with animation and joy. He began to request ‘Sparky?’ for the trailer and, always, he’d turn to us and exclaim and dance and beam.

One night, having difficulty getting Gabriel to sleep, I sat quietly with him. Thinking he’d finally drifted off, I tiptoed away, only to be stopped in my tracks by the little voice that floated out of the darkness – ‘Something big is gonna happen!’ The moment was eerie and magical; tears filled my eyes and swelled my throat.

Many phrases from FRANKENWEENIE were to follow, and this was before we’d even seen the film! Gabriel made – ‘Turtle, dinosaur’ – a request for us to sketch Shelly the turtle’s transformation into a T-rex like monster. He started to tell us ‘Mr Whiskers had a dream about you last night.’ He learnt new words: bat, monster, sea monkey! And, amazingly, he began to role-play. We’d been told that ‘autistics’ lack imaginary capacity, yet our son took what he saw in the FRANKENWEENIE trailers, and ultimately the film, and began to apply it to his toys: play-sniffing, tracking, chasing cats, even dispensing kisses.

But the biggest moment was yet to come. It wasn’t Gabriel seeing his Sparky birthday cake on his fourth birthday and being utterly transfixed sparky cake– ‘Spaaaaarky!’ It wasn’t going to the cinema three times a week to see FRANKENWEENIE while it was out. It wasn’t him managing to go to nursery for two hours because he had a laminated picture of Sparky in his hand and another in his bag. It was the giant sign he gave us during our first viewing of the film.

We’d spent months digesting, assimilating and loving the FRANKENWEENIE trailers, posters and placards, so we approached the screening with the ecstasy of parents knowing they were giving their child The Greatest Gift Ever. It started brilliantly, Gabriel was spellbound, but then he started to scream and sob… Sparky had been hit by a car.

Tim Burton didn’t show us the car, he didn’t show us the corpse; we saw nothing but Victor’s reaction – a face of fear shouting ‘Sparky! Nooooo!’ And that was the moment that many clinicians and educators were proven wrong. We had been told ‘autistics can’t express empathy and have little or no sense of other,’ yet here, in his distress, Gabriel was clearly showing us otherwise. He has shown us the same countless times since, identifying with a film character to such an extent that even subtle bullying will reduce him to tears. The first screening of a film is always difficult (and this is where Autism-Friendly Screenings are vital), as Gabriel has yet to discover that the character emerges triumphant and safe.

FRANKENWEENIE sparked a magical trajectory for us, showing us the actual potential in our beautiful boy, rather than the deficiency that others perceive in him because he can’t express himself in recognised, neurotypical ways. It also has given us so many moments of unbridled joy and discovery that I don’t have the words to convey their significance in our lives.

Ultimately, FRANKENWEENIE is the tale of a boy who is different, isolated and misunderstood. The boy loses himself in film, and the adults find themselves as he shows them what love really is. In this way, and every other way, FRANKENWEENIE is the film of our lives.

___________________________________________________________

Please note: this post first appeared on the Picturehouse Blog after I was invited to contribute to it-the link to that, which also contains images, is http://picturehouseblog.co.uk/2013/12/05/frankenweenie-sparking-connections/ In addition, it also appears on film director, Tim Burton’s Facebook page-the link to that is
https://www.facebook.com/TimBurton

 

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Autism, or Something Like It: Expressions of PosAutivity: #AutismPositivity2014

By Zita Dube-Lockhart

Everything I need to know about parenting, I learned from Mr. Holland.

Growing up, I was often told that I was born with the “song of God written on my heart”.

That when I sing, it is like “listening to the voices of angels, heard on earth”.
That there was “something about my voice that moved the soul”.
Well, I don’t know much about God’s music preference.
And I’ve never heard an angel sing.
But I do know that music feeds my own soul; singing makes me feel alive.
***
One of my favourite movie’s is Mr. Holland’s Opus. I relate to this man, to his passion for music and his passion for life, in a way that is hard to express in words. I understand him. I understand why he chose his family over his music; how he never achieved fame, but managed to achieve greatness.
I made this choice as well. And it is a choice I have never looked back on.
But there is another side of this character that I could never have predicted would hit me so hard to my core.
He became the parent of a deaf son. A son who could never experience music the way he experienced it. A son that he was afraid he could never relate to because of this.
The scene where he discovers that his son is deaf is heartbreaking. Even as a young child, I remember feeling this man’s anguish, his fear, his desperation.
I remember so vividly understanding his anger at the world.
How could a man whose entire life revolved around music ever relate to a child who didn’t experience it first hand.
This became my greatest fear. I became terrified of one day having a child who could not talk to me, a child who could not sing.  I had a phobia of having a child with a disability, a child who could not sing.
Singing is how I feel alive. How could a person feel alive if they can not sing?
***
In the film,  Glenn Holland (played devastatingly well by Richard Dreyfuss), battles his own demons with his son. You see him going through the stages of grief. You watch as he rejects this child because of his disability.(Transcript from the movie Mr. Holland’s Opus, as taken from IMDB)

[Glenn and Iris are discussing the possibility of sending Cole to a special school]
Glenn Holland: The doctor said that gestures meant…
Iris Holland: It’s way more than gestures.
Glenn Holland: That gestures meant that Cole would never learn how to lip read or to talk!
Iris Holland: He can barely talk now, he can’t say two or three words!
Glenn Holland: The guy is a specialist, Iris!
Iris Holland: Ohhh, he’s a specialist who thinks that deaf people are retarded and he is not retarded, he is…
[Cole is screaming, asking for something and Iris doesn't know what it is]
Glenn Holland: What does he…? Give him what he wants!
Iris Holland: I don’t know what he wants, I don’t understand what he’s trying to say. Don’t you get it? You walk to school every day with all these children who are normal. I can’t talk to my son! I don’t know what he wants or what he thinks or what he feels. I can’t tell him that I love him, I can’t tell him who I am. I want to talk to my son! I don’t care what it costs, I don’t care what the stupid doctor says it’s right or wrong. I want to talk to my son!
***
I have a four year old son. He is Autistic. And he is non-speaking.
I use that term very deliberately: Non-speaking, as opposed to Non-verbal.
Sam doesn’t use speech.
But he does have a voice.
***
Glenn Holland continues to have a torn and troubled relationship with his growing child.That is until the child fires back in an incredibly poignant scene:
(Transcript from the film Mr. Holland’s Opus, as taken from IMDB)

Iris Holland: [Iris is translating Cole's signing for Glenn] Why do you assume that John Lennon’s death would mean nothing to me? Do you think I’m stupid? I know who John Lennon is.
Glenn Holland: [Glenn turns to Iris] I never said that he…
Iris Holland: [Iris continues translating] I cant read your lips if you don’t look at me.
Glenn Holland: [Glenn looks back at Cole] I never said you were stupid
Iris Holland: You must think so. If you think I don’t know who The Beatles are or any music at all. You think I don’t care about what it is you do or what you love? You’re my father. I know what music is. You could help me to know it better, but – no. You care more about teaching other people than you do about me.
Glenn Holland: [Cole makes a final gesture, Iris doesn't translate it] Iris… What does this mean
Iris Holland: That means “asshole”.

***

No, Cole was not ‘stupid’. Cole was not incapable of grasping the incredible events happening around him.

Not being able to hear is not the same as not being able to understand.

Not being able to speak is not the same as having nothing to say.

***

By the age of three, Sam had not acquired any functional use of language.Heintonated-mades sounds to express glee, frustration,oranger- but these we were told that these did not count as “communication”. “He is just making sounds,” saidtheSLPs. “They don’t have meaning.”We were told that he was shut out from the world, possibly not even understanding the emotions and experiences of those around him.We were told he might never learn to communicate.

“Low functioning” they say. As if words are the only expression of capacity.

***

Something changed for Glenn Holland the day that his son expressed to him that he was truly capable of understanding and relating to the world despite his disability. Something in his heart softened. Something in his mind opened.

A connection was made.

And he became a very different person.

A very different father.

He learned- through the example of Beethoven and hearing through vibration- that music could be accommodated to meet his son’s needs. He learned that while Cole might never be able to hear with his ears, he could hear with his heart and experience its pleasures.

He created music for the deaf. And he told his son that he was beautiful.

(See link to video Beautiful Boy: https://www.youtube.com/watch?v=j0IMASimhRo#t=10 )***Music has always resonated with Sam. It should not be surprising to me since his father and I are both musicians, and music occupies a deep and meaningful place in our lives.

When he was about three and half, Sam discovered an app on his ipad that played his favourite song.

“Twinkle Twinkle, Little Star”

He played it over and over.

You could tell he loved it.

Even if he couldn’t tell me so…

Until one day he did.

(See link too video Sammie learns to Sing: https://www.youtube.com/watch?v=Sz071pb-NkA )

***

From the darkness of his room, lit only byhisipad, I could hear his little voice ‘intonating’.”It means nothing,” they told me. “It’s just sounds.”Until the sounds take shape. And a song is formed.

And my child sang. For the first time. But it would not be the last.

***
I have often been told that my voice is like the song of God, written on my heart.
That when I sing, it is like to the voices of angels, heard on earth.

Well, I don’t know much about God’s music preference.But I do know a thing about beauty.Beauty is the sound of my son, learning to sing in a world that told me that he can not.

Beauty is in finding your voice, whatever shape it may take, and sharing it with the world.

Beauty is in learning to sing because your heart occupies so much joy that it can not contain it.

It simply must be expressed.

***

I am far from a perfect parent. But I learned an awful lot from that movie.

I learned that grief is a natural part of the human experience when things turn out differently than we imagined.

I learned that the only way to form a meaningful connection is to cast aside your preconceived notions about what communication should look like, and learn to find a language that you both can share.

I learned that to love your child isn’t to try to change them; it is to change the world for them.

And I learned that having a disability does not- in any way- impact your capacity for human understanding.

One day, I will share Mr. Holland with Sam, and he will know that my journey to acceptance really took flight the day I heard him sing.

This post is part of the 2014 Autism Positivity Flash Blog: Expressions of PosAutivity. For more information on this event, please visit the Autism Positivity website. To read more posts that are part of the flash blog, please use the #autismPositivity2014 tag. 

 

Original post at Autism, Or Something Like It: http://autismorsomethinglikeit.blogspot.ca/2014/04/expressions-of-positivity-everything-i.html

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God’s PosAutivity #AutismPositivity2014

By Elaine Waters

#AutismPositivity2014Flashblog

 

What can autistic clergy contribute to the world? Perhaps, most importantly, awareness of the diversity of God’s creation. God created people with autism, who grace the world with their own modes of expression that greatly enrich life on earth; and make it a bit more like life in heaven!

Original post at: http://aspieminister.com/2014/04/29/autism-positivity-flash-blog-2014-expressions-of-posautivity/

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Richard Long Celebrates 1000 Ausome Things #AutismPositivity2013

Reprinted with permission from Richard Long’s Facebook

A is for Ausome! 1000 Ausome Things #AutismPositivity2013

Today is the Autism Positivity 2013 Flashblog Event! And I have a lot of positivity to share. Absolutality!

When our daughter was diagnosed 9 years ago, the only thing I knew about autism was Rainman. Everything I was told in the beginning, terrified me. It was a tragedy! An Epidemic! Autism had to be STOPPED! 9 years later, my perspective has shifted 180 degrees, largely due to my wife Ariane Zurcher introducing me to autistic adults who were incredibly intelligent, insightful, witty and downright hilarious. They were also exceptionally caring, sensitive, compassionate, empathetic and yes, sarcastic–many of the qualities that the “experts” say are defining characteristics of what autistic people lack.

LACK, or the “deficit model” of autism is all too tragically (in this case, I’m NOT being hyperbolic) still the prevailing viewpoint of the media, the medical and scientific community, politicians, educators, caregivers, autism fundraising organizations (like Autism Speaks), advocates, activists and parents of autistic children. Like me.

I bought into all of this. Viewed Emma’s disabilities as tragic, our lives as tragic and all of us at war with autism. We were going to find a cure, and the Emma would be “normal”. Today I just want her to be who she is: blissfully happy most of the time, silly, funny, mischievous, talented, loving and highly intelligent. Emma is completely unselfconscious. She doesn’t worry about what people think of her (as far as I can tell). She doesn’t tease or bully other kids. She may be aware of her physical beauty, but it doesn’t seem important to her in the least, although she likes pretty dresses–and sequins when she’s in the mood to perform, which is often.

Emma is a born performer. She has an incredible voice, amazing range, power and near-perfect pitch. She likes an audience. Every dinner party we have is an occasion for her to hit the stage. She has very eclectic tastes in music: her current top twenty list includes Bowie, Lady Gaga, September, J. J. Cale, the Clash, and an assortment of Greek, Latin and Mid-eastern music. She also has an astounding memory, so every note of every song, every harmony, every word is recorded and retrievable.

I could go on and on with my positivity inventory, but if you’re at all interested in learning more, understanding more, and having your perspective jolted in a new direction I have two blogs to recommend:

Emma’s Hope Book by Ariane tells of our journey and discoveries and is wonderfully written:http://www.EmmasHopeBook.com/

Tiny Grace Notes by Ibby Anderson-Grace, an amazing autistic woman and dear friend who has opened our eyes and our hearts to a more wonderful world:http://www.tinygracenotes.com/

On both of these blogs you’ll find lots of links to other ausome autistic bloggers, writers, activists, mentors and simply marvelous human beings.
So come inside our world and make yourself at home. You are more than welcome you are wanted. We have a long way to go in order to shift the mainstream autism from tragedy and lack to opportunity and ability.

So get your positivity on! Share and care. Learn and discuss. Make the world a more wonderiffic, fantabulastic place to live!

em1 em2 em3

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Autism Positivity Flash Blog


This past April, someone, somewhere googled “I Wish I Didn’t Have Aspergers”. The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad. She wished she could have answered.

We don’t know who it was. We don’t know where he/she lives. We have no idea if he/she found what he/she was looking for in that search.

We do know that search directed that person to a blog. We do know the searcher clicked on it in an attempt to find what they needed. And we do know enough about the challenges of autism to know that person is likely not alone in that sentiment.

So, we got to thinking. What would we say to that person? What if it was a kid, desperately trying to make it through tough years of intolerance and ignorance? What if it were a person who might never stumble across the amazing voices speaking for autism acceptance? What if that person thought himself/herself all alone? What would we say about the present? What would we say about the future? What would we say about happiness? And hope?

Each of us in the autism community –- self-advocates, parent advocates, friends and family, teachers, health professionals—we would all have different messages for #IWishIDidn’tHaveAspergers. But likely we would all try to send the message that there is a brighter future and that friendship and support are out there.

So we asked the autism blogging community (and everyone else) to write a message of positivity to #IWishIDidntHaveAspergers, so that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand. We created a flash blog event for the last day of Autism Awareness/Acceptance Month: April 30th, 2012.

This website is a tribute to the powerful responses from the hundreds of people who participated, by reading, writing, commenting, and sharing their stories.

If you have stumbled across this website, we hope that you are able to find solace and comfort, and to know that you are not alone. Welcome to the family.

 

This Autism Positivity Flash Blog Event is the brainchild of Thinking About Perspectives, a group of bloggers committed to increasing autism awareness and acceptance via open and respectful dialogue. We are: 30 Days of Autism, Outrunning the Storm, The Third Glance, Aspie Kid, Flappiness Is, Quirky and Laughing, Life on the Spectrum, Fairy Tale Forgotten, The Aspie Side of Life, and Inner Aspie.

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