Tag Archives: Autism

ParaEducate Expressions of PosAutivity #AutismPositivity2014

By ParaEducate

For the second year in a row, ParaEducate is proud participate in AutismPostivity2014. This year’s blog request was to focus on positive stories about Autism. Renay H. Marquez, Co-Founder of ParaEducate and a paraeducator, has chosen to share a personal story of Autism.

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The story starts nearly seven years ago. The young man I was working with was sitting with his case manager going over the new topic: Disability Awareness. Unlike other times, this student did not have to fear any other student leaning over and learning of his disability. The classroom was empty. I was just in the room that morning.

And he didn’t make eye contact with her. He had the conversation that was his homework assignment with his parents: “When did you know I had a disability? And what happened?”  A young man knowing he had been different all this time but now his fate seemingly sealed in this box that had been originally labeled “Hope” with all the dreams that he and his parents had always spoken about for his life. Now the label was tattered, frayed, and all but removed replaced with the word “Autism.”

And then we move this story to the last two years. When I had become the voice of comfort for some close friends hearing that their boxes of Hope for their own sons was seemingly changed by the confirmation of “Autism.” And then watching them stand and not know what action to take to be able to take that next step.

And what I had to say to all the parents I’ve come across, I said to my friends:

You love your son. You have always loved your child.

Autism is the name for the stuff that you always thought you really had a hard time loving.

Autism is not the end, it is only a beginning.

And if you remove the word from the box, you’ve ignored everything else about your child.

You love your daughter. You have always loved your child.

Knowing what it is called won’t take away any of the fears or worries. Some of them are transformed, but you can’t ignore the reality.

And once the fog had disappeared and been replaced by the series of changes the family will have to get used to, none of this will seem so foreign. And you have a different family story to talk about around the table about the way your family became one.

Now the boys’ world  is a little different. I can point out who are successful with and without disabilities and none of that matters because they are all human. And ultimately, this is the lesson I need the boys to learn above all else. Remind the boys of the truth in the  fragility of humanity. Remind the boys that others have the right to their humanity as well. Remind you that we all come to that understanding at different places just as we are all growing up in our own time. Not on a time table based on a date of the calendar. There are times when the boys will “just get it.” There will be times when they forget it. They might know the name of the reason why they have to work so much harder, and there might know be others who know why the boys have to work harder. But the boys aren’t alone. The boys have me. The boys have their respective parents. The boys have the mountain of other people who I have introduced to them also living with Autism.

Now, the young man in the beginning of our story, he’s now 20. He happens to be going to college. There are other young men and women who have had the same story told to them. And they’ve dealt with it differently each growing in their own way, some of them went to college, some of them are holding down jobs. You’ve met some of them. You didn’t know back then when I knew, before your parents knew. You just saw gangly legs and arms, a few unkempt teenage mustaches, and a bright smile. You heard some forced greetings. You know you fit there with these students. And your path will be there for you. Because while Autism veiled your parent’s original hopes, Autism and Hope were really sitting side by side on that box.

Original post at:http://blog.paraeducate.com/?p=497

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Ballastexistenz: Expressions of PosAutivity: #AutismPositivity2014, Crocheting and Dancing

By Mel Baggs

Please see video linked here: Crocheting and dancing. from Mel Baggs on Vimeo.

Crocheting is my new perseveration.  You can call what I was doing in this video stimming, dancing, or whatever you want, but it’s how my body moved naturally and it felt great.

I was making granny hexagons for an afghan that’s turned into an all-purpose piece of fabric, that I’ve used as a blanket, a shawl, and a skirt.  I’ve also made a wide variety of other things, shown below:

crochetafghanshawl crochetafghanskirt crochetbabyblanket crochetbooties01 crochetfuzzyyellowhat crochetowl01 crochetowl02 crochetpurplefuzzyhat crochetpurplehat01 crochetscarf01 crochetshawlkeys crochetshawlsyellowbamboo crochetyellowhat01 crochetyellowshawlbutton crochetafghanblanket crochetafghan01

Closeup of a crocheted afghan worn as a shawl, with a shawl pin.

 

There’s hats, scarves, shawls, baby booties, and even a stuffed owl with a jar inside.

Crocheting is pretty much all I do these days.  It’s nice to have something I can do with my hands that doesn’t require language or strenuous activity.  I’m running into a lot of financial trouble because I keep buying yarn even when I can’t afford it.  But I love crocheting, and it’s completely taken over my life.

I could never crochet or knit, growing up.  It was visually too confusing to find where the stitches were.  I had some of that problem when I was trying to learn this time, but apparently my visual processing is finally mature enough that I can distinguish what a stitch looks like.  Once I figured that out, the rest became easy, and I took off really fast.

As an autistic person, and my particular type of autistic person, I need things to do that aren’t words, aren’t abstract, and aren’t surfing the net.  I’ve been looking for something like this a long time.  I was trying to get into sewing, when I found my old childhood crochet hooks in my sewing box.  I never did get into sewing, because I took off so fast with crochet I haven’t looked back.  It’s my only real interest at this point, and I bore people by trying to talk about it.  But I love it.  I always have at least three projects going at once that I switch off between depending on how I’m feeling.

What does this have to do with autism?  Besides the ‘special interest’ thing, the basic thing is, I’m an autistic person and this is how I enjoy my life right now, and that’s all that matters.  Also in the video I’m dancing to the autistic band, The Raventones.  The movements make more sense with their music playing in the background.  ;-)

 

Original post at: http://ballastexistenz.wordpress.com/2014/04/30/expressions-of-posautivity/

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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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Awakening: Reinventing Mommy Celebrates 1000 Ausome Things #AutismPositivity2013

This post was originally published on Reinventing Mommy at http://reinventingmommy.blogspot.com/2013/05/awakening-reinventing-mommy-celebrates.html and is reprinted here with permission from the author.
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When I sat with my screen open to a blank page contemplating what I would write for Autism Positivity 2013, I had a hard time selecting one specific aspect of my sweet 4-year old autistic son that does not fill me with boundless joy.  He is positivity and love and goodness personified.

Yet, when thinking on this journey that both my boy and I walk hand-in-hand each day, one word came to mind - awakening.

You see, before my son was born, I was a workaholic quality engineer for a tissue processing company.  On the day I went into the hospital to give birth, I had been on bed rest for two weeks.  I looked forward to returning to my normalcy – the hustle and bustle of my career.  If not for my son’s special needs and eventual autism diagnosis, I might still would be in that same building, cranking out reports day-after-day.  My son would be in daycare like so many other children his age.  We would be looking at private schools for his coming Kindergarten year.  He might have a sibling.  I would hurriedly make my usual Earl Grey Tea without enjoyment and would speak to people in passing.  We would be an absolutely ordinary family.  Nothing remarkable about us, really.

This little boy I carried and delivered that day had other plans.  He was here to change the world for more people than he could possibly imagine.  There would be nothing ordinary about him; he was destined for an extraordinary life.

Indeed, he has been my greatest teacher.  After my son was diagnosed, his very wise developmental pediatrician recommended that I seek training in DIR/Floortime from a very respected professional at Floortime Atlanta.  I immersed myself in her teachings and those of Dr. Stanley Greenspan, but their most poignant piece of advice was this:  Follow Your Child’s Lead.

And I have been doing so ever since.

It was a radical shift in everything I had learned about parenting.  For the first two years of his life, I had operated on the principle that so many are taught – parenting is a dictatorship.  It was my role to command; it was his to follow.  I had to throw away the parenting books full of advice and milestones and take his hand, giving him control over the life through which I was to lead him.  Instead, I gave him control, stayed at his side, and was determined to let him determine the course in the days and months and years ahead.

Floortime and my son reversed those roles and – in doing so – opened my eyes to the world as I had never seen it before.  No longer did I see flapping hands as a negative; they were a sign of my son’s overflowing joy.  When I got down on his level, put my head alongside his, and looked to see what he was seeing, I saw incredible wonders and beauty in our world that I never knew existed.  In trying to take into account his sensory needs, my senses were opened to experiences that I never imagined.  I learned just how little we really needed words for communication, that I could understand my boy without him ever saying a word.

It is through my son that I have come to understand what true beauty really is.  It is through him that I take the moment to breathe in each experience and live life to its fullest.  My morning tea no longer is made in a rush.  Instead, I inhale the aromas and watch the leaves swirl peacefully in the infuser.  I listen to the gentle clinking of the rock sugar as it hits the bottom of my glass.  I see hues of color in each bubble and marvel at its travels on the breeze.  I know that all behavior is communication and I open my eyes to hear what it is that he has to tell me.  I know that love comes in so many forms that I cannot say that his lack of spontaneous hugs and kisses means he doesn’t love; rather, his whole existence is an outpouring of love.

My little boy – my little boy who says so little while saying so much – taught me all of this.  I’d argue that it is because of his autism that he has opened my eyes and ears and heart and soul to all of the richness that life has to offer.  I followed his lead and he’s showing me the world through his eyes.

What a beautiful awakening I have experienced…all because of one little boy.

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Cari Noga Celebrates 1000 Ausome Things #AutismPositivity2013

This post was originally published by Cari Noga on http://www.carinoga.com/2013/04/30/1000-ausome-things/ and is reprinted here with permission from the author.

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So it looks like one thing. Son spells out name with train tracks. Cute.

Alphabet tracks

That’s what I would have thought three years ago. And then dismissed it.

But when my son did this two nights ago, it took my breath away. After all, difficulty with communication is a hallmark of autism. That’s what the professionals say.

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Restless Hands: What Autism Means To Me #AutismPositivity2013

This post was originally published on Restless Hands, at http://restlesshands42.wordpress.com/2013/04/30/restlesshands42-celebrates-1000-ausome-things-autismpositivity2013/and is reprinted here with permission from the author.

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It’s been a rough week so far, and I’m tired, so this will be short.

Autism has brought so much positivity into my life. I still don’t know if I qualify for a “formal” autism diagnosis, but it doesn’t really matter. The autistic community has accepted me, and supported me, and helped me to understand myself, and now I no longer feel isolated for my scattered handful of mental functioning deficits, and that is enough.

Autism has given me friends, and new hobbies, and new ways of thinking about myself, and of thinking about others, and thinking about thinking, and about education, and about human rights and dignity and intelligence.

A few days ago, I saw a screening of the documentary “Wretches and Jabberers,” the story of two men who grew up without any codified means of communication and then, as adults, traveled the world teaching others about autism and about the fact that intelligence does not require speech.

And I cried at the times in the film where I could understand the body language and needs of these men and their own aides did not.

And my dear friend and housemate flapped zir hands with me at the wonderful parts.

And zir boyfriend laughed with the two of us at some of the ridiculously clueless comments that a few allistic (non-autistic) audience members made afterward, and the three of us cheered for the two autistic young men who volunteered to come up to the microphone and tell the whole audience that they liked the film.

Autism means many different things to different people, including people on the spectrum and their families. I know that for many people, being autistic has involved a lot of pain and suffering and stigma and struggle.

I will continue to fight for a world in which being autistic does not have to involve any more pain or suffering or stigma than not being autistic.

Because to me autism means, and will always mean: laughter with happy flaps, and the fun of pointing out patterns and oddities to each other, and rocking while brainstorming about disability rights, and geeky jokes, and people who squee in joy with me at rainbow colors and the unexpected beauty of under-appreciated things like math, and science, and solitude.

To me, that is autism.

And I hope they never find a cure.

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My Boys with Autism are Awesome #AutismPositivity2013 Kat’s Cafe

This post was originally published by Katrina Moody on Kat’s Cafe, at http://katscafe.org/boys-with-autism-awesome and is reprinted here with permission from the author.

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Being Positive about Autism

Last year I was a part of the Autism Positivity project because I felt it was so important to present the positive side of autism. Our reality, yes, but not always so awful, autism is just a part of who my boys are, and my boys with autism are freakin’ awesome!

I’m not going to say it’s always rainbows and puppy dog tails, but my three guys have shown me, time and time again, how utterly awesome they really are, and this year’s Autism Positivity Project asked us to focus on that “Ausome” and share it around.

I couldn’t ask for a better reason to share a bit of our reality with you all. You see, it’s easy to be depressed, to feel overwhelmed, and to worry about the future when you have children with special needs. It doesn’t matter if your kids have autism or some other diagnosis, if you can’t see the positive in it and who those amazing kids are then it’s harder than ever to be the best parent you can be.

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Cissi Tsang: Believe in your strengths – 1000 Ausome Things #AutismPositivity2013v

Lots of people will tell you about what you can’t do. About how debilitating having autism can be. This is what I’ve noticed from a lot of non-autistic people. They either lower their expectations of you, or if you are deemed “high functioning”, then they will insist you are not autistic. That is wrong.

Remember: there’s a lot of things you CAN do as well. There are a lot of positives with autism, so work with your strengths. You are more capable than what some people would like to tell you. Just because you have autism doesn’t mean you’re meant to be a vegetable. We have a lot to offer to the world.

Sure, autism is pervasive. It defines us by colouring how we perceive and interact with the world. That doesn’t make how we operate “wrong” in any way. It’s just different.

I’m autistic, yes. I don’t make a big scene about it, but I do let people know that I have it. It’s a part of me and it shouldn’t be denied, in the same way as my ethnicity and background. I’m also a photographer, I’m studying for a Master’s in Art and Design, a freelance writer and a musician.

Do I have difficulties from autism? Yes, all the time. I’ve been described as having “extreme difficulty with sequential thinking” and “global cognitive difficulties”. Considering some of the…well, stranger ways my brain works sometimes, yes, I agree with that.

However, I refuse to let those labels restrict my aspirations. Don’t let your labels restrict you, too. There are always methods to work around anything.

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Autismcollage Celebrates 1000 Ausome Things #AutismPositivity2013

This post was originally published by Rachel on Autism Collage at http://autismcollage.tumblr.com/post/49333861042/autismcollage-celebrates-1000-ausome-things, and is reprinted here with permission from the author.

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Today I would like to celebrate getting to know my Autie little brother.

I met him a few years ago. He was a startling addition to our family and immediately became the prince of our home. His favourite foods are cereal, ice-cream, and chips, which he would gobble up (with passion) at any opportunity.  He is most skillful at riding his scooter at great speeds, through narrow spaces and around sharp corners. He even rides backwards at times, scaring my Mother to bits.

My brother is an expert of his environment – he taps sticks to explore different surfaces and sounds within his surroundings, and listens carefully to reverberations within enclosed spaces. He loves water – splashing it about, placing his hands and nose on the skin of it, jumping into it. I often wish I could perceive my environment the way he can.

My brother is an intelligent, intuitive person with a strong independent streak. He might not say much, but can understand much more than he can express. He chooses his company wisely, and is not afraid to show his displeasure towards anyone who upsets him.

I love my brother to bits, and will always strive towards understanding him, and the Autistic community better. I hope that one day he will be able to join the online community himself.

Today I celebrate getting to know him - it has been an honour! Thank you lil Matt, for absolutely changing my life.

 

 

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Andrew Dell’Antonio celebrates Ausomenesses #AutismPositivity2013

[description: a young Asian woman in her "tweens" is playing a violoncello with the assistance of a caucasian woman in her twenties, who is helping to hold the bow steady while the young Asian woman is guiding its motion with her hand; the young Asian woman has her fingers on the 'cello fingerboard, her feet are up on the chair-stool on which she is sitting; she is looking ahead very intently, and she has a slight and subtle smile on her face.]


My child is Ausome.

Sensations overwhelm her brain – her body reacts, recoils,
then she regroups, re-engages,
fully immersed in the presence of her experience
beyond joy, beyond distress
I marvel

Her tribe is Ausome.

Empathically embracing, gently firmly teaching
Celebrating and mourning, angry and loving
Generous and persevering in the face of unfathomable rejection

I am Aued.

(thanks to Paula Durbin-Westby, on whose blog this image originally appeared, with the following reflection: http://autismacceptanceday.blogspot.com/2013/04/testimony-to-power-of-autism-acceptance.html)

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