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And once the fog had disappeared and been replaced by the series of changes the family will have to get used to, none of this will seem so foreign.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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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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An Autistic Brain #AutismPositivity2014

By Debra Hosseini

“Have you had a brain injury?” the neuroscientist asks me after performing an EEG.

“No,” I say.

She points to diagrams of my brain with the different colors which measure delta, theta, alpha, and beta waves.

“You have an autistic brain.”

“You see this?”

I look at the four pictures which are labeled Z Scored FFT Coherence.

It looks like a platter of tangled red spaghetti on all four pictures.

“You have hyper-coherence. Whether your eyes or closed or open your brain waves look the same.”

“Well, I guess that explains Kevin,” I say. Kevin is my Autistic son.

“I can help that with neurofeedback,” she says.

She places another cap on my head which has lots of wires. She puts some sticky goo in my hair and hooks the wires to a machine which is attached to a computer. She inserts the movie “Pretty Woman” in the DVD drive.

I’m to control the brightness of the screen with my brain. This is called brain training.

“You’re doing really well on this,” she says. I’m motivated to make Richard Gere brighten up so I try extra hard.

After the session she takes off the cap and my hair is plastered to my head with the sticky goop.

“I hope you aren’t going anywhere,” she says.

At home, after I wash my hair I call up my best friend and tell her about my brain training session.

“What’s wrong with having an autistic brain?” she asks. She like me has a child on the spectrum.

That makes me ponder.

“I don’t know,” I say.

I wonder how my hyper-coherent brain effects me.

When I google hyper-coherence I find Tourette’s and OCD are symptoms. I know I can get stuck on a thought. Kevin does this too. And so does Kurt my Aspie boyfriend. Stuttering is also a sign of hyper-coherence. I never stuttered but have difficulty with word retrieval sometimes.

“A lot of programmers have hyper-coherence,” Ben, my friend Nancy’s son, says. Ben is Aspie and probably hyper-coherent too.

My past occupation was as a computer programmer and systems analyst.

I continue the biofeedback sessions for six more times and get another EEG. Guess what? I’m no longer hyper-coherent.

Do I feel any different?

I feel my brain is a little sharper now. And I’m a little more relaxed.

“I’d like to do an EEG on Kurt’s brain,” the neuroscientist says.

“Kurt has Weitzulsucht,” I tell her.

“Huh?”

“It’s a disorder that causes incontinent punning. Oliver Sacks talks about it. He can’t control himself. It’s from a frontal brain injury when he fell into the diaper pail as a baby,” I continue.

“Well, I bet his brain EEG would be really interesting,” she says.

Yea, that’ll be another story.

So I’m writing this for the Autism Positivity Day Flash Blog. As I reread it I don’t know if it’s positive. I know that Kevin, my Autistic son, Kurt my Aspie boyfriend and myself all fall somewhere on the spectrum and I feel pretty positive about that. I do know I like to be around autistic people. They have no artifice, make good friends, and are empathetic (unlike what most people seem to think).

Freud once said that nobody is “normal,” and that to me is a good thing. It’s the people who pretend to be normal who may have the real issues.

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What We Have Learnt – #AutismPositivity2014

By Sabrina Landry and Rebecca Atkinson


2e0db-screen-shot-2014-04-21-at-6-45-04-pmToday is the last day of Autism Awareness Month which means that for all those whose lives are not touched by someone on the spectrum or living in the spectrum themselves Autism will probably become a passing thought until next April that is.

I love the Autism Positivity Project. To often the negative attributes of Autism are highlighted and the positive things that Autism has brought to us pushed aside. Autism may have it’s challenges but the people who have Autism are beautiful, caring, compassionate, intelligent, honest, driven, and amazing individuals. As a parent my greatest fears are that my Monkey will be perceived as different, not accepted, and that he will therefore suffer heartache because of this. I hope that by the time my Monkey is an adult there will be a more positive outlook on autism but until that day comes I will continue to build his confidence by reminding him of how amazing he is and all the wonderful things he can do. I always tell him that he can be whatever he wants to be when he grows up regardless of Autism and I truly believe this.

Rebecca and I decided that for our Autism Positivity Post that we would highlight how autism has positively affected us and what our Ausome children are doing…

Read the rest of this post at:http://spectrumwarriors.com/2014/04/30/what-we-have-learnt-autismpositivity2014/

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Quiet Please #AutismPositivity2014

By JD Scott  


I have an old self-portrait
That I made some years ago,
The last of several works of art
I’d stopped when feeling low.

 

See, sadness, pain and anger
Made me seek a doc or two,
Lo and behold, I soon found
My depression was a clue.

 

It turned out I’m autistic
With Asperger syndrome, gad!
It was a shock, but sure explained
Why I had felt so bad.

 

For being hypersensitive
And needing time alone,
For carrying out my loved routines
Or turning off my phone.

 

I wanted to retreat some place
That’s quiet, calm and slow,
The world was way too noisy
But what was I to know.

 

Well time has passed and I can say
I now appreciate,
What I perceive is based upon
The wiring in my pate.

 

JD Scott © 2013

@AnEndInItself

Listen for the Light (2010) by JD Scott

 

Published in Autism West Midland’s book, ‘Ultraviolet Voices: Stories of Women on the 2e0db-screen-shot-2014-04-21-at-6-45-04-pmAutism Spectrum’ (2014).

 


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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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I am me #AutismPositivity2014

By Paul Lidder

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I am me

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