Stop

Stop
 
These words of tragedy
Emblazoned on notepads and billboards
This epidemic of dehumanization
This narrowed definition of being
Twisted finer and thinner
So that it lacks any sensitivity
So that the words themselves are
A garrote
Cutting into flesh and spirit
 
Stop
 
When words and stance 
are played out deftly
to define other as less
to define different as solely deficit
and are used to silence
This – THIS – is the tragedy
 
Stop
 
My child is burdened with these words
That exclude
And distance
And define other as broken
And are shaped with intent to siphon fear
alchemy-like into big business’ pocketbooks
Words seeded and hooked with the bait of crisis
So the fund$ continue to be reeled in
 
Stop
 
Those who are on your hook
Who take up your fear-filled bait
Feeding hungrily on your emptiness
Your mean lies
They are left empty
And hopeless
Seeing only unmet potential
Instead of the beauty of diversity
This – THIS – breaks this mother’s heart
but at the same time, strengthens her resolve

Stop 

When difference is framed in fear
To stir activity
A call to action
To shore the millions needed to fund
your oft’ wonton cure
And at the same time silences those
for whom they claim to speak
This is not charity
 
Stop
 
The stance of stigma
Whose twisted legacy
Is used justify the pain
The othering
The silencing
The disappearing
The murder
Of people
Like those whom I love best
 
Stop!

Leah Kelley ~ Thirty days of Autism ~ June 2013

InmemoryofAlex.jpg

 
 
Related Posts:
http://www.autistichoya.com/2012/04/stop-killing-us.html
http://www.mmonjejr.com/2013/06/his-name-was-alex-spourdalakis.html
http://ravenswingpoetry.com/2013/06/17/rachels-lament-for-alex-spourdalakis/
http://mamabegood.blogspot.ca/2013/06/when-autistic-child-is-killed.html
http://blogs.redorbit.com/it-takes-a-village-to-kill-a-child/
https://ollibean.com/2012/09/01/a-poem-about-pain/
http://indigowombat.tumblr.com/post/52745911873/the-list-grows-longer
http://emmashopebook.com/2013/06/12/but-what-about-alex/
http://paulacdurbinwestbyautisticblog.blogspot.ca/2013/06/alex-spourdalakis-murder-in-memoriam.html
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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in ablism, acceptance, ASD, Autism, autism stigma, diversity, poem, poetry, reframe tragedy | Tagged , , , , , , , , , , , , | 2 Comments

Buying the Beast…

Today Craig and H and I went to look at a motor home. It is a 1984 model – fancy is not a term you would be likely to choose to describe it. We have decided it is perfect for us… and will take care of the final details tomorrow… and then the beast will be ours.

H was immediately smitten with it because it looks like the one in Walking Dead… I have to agree; that puts it way, way up on the cool factor.

So we have been pondering names… We like to name things in this house. We considered Merle – you know – the bad guy from Walking Dead. Ya – that was pretty funny.

Then we considered Merlin, Slave 1 (Jango Fett’s ship), Enterprise, Eagle 5 (The interstellar motor home from Spaceballs), and The Millenium Falcon.

MSDSPAC EC002                                                                     SPACEBALLS, Space Winnebago, 1987. (c) MGM.
 

I still like Merle – or maybe Orwell, playing on the 1984 reference… but we are going to let H decide.

Who am I fooling?? I already know H is going to choose Millenium Falcon. In all honesty, I m-falcomam certain he is already calculating out how to make it look like there is a bubble-dome-gun-turret-type-thing on the roof… or maybe even better… an R2D2 dome like the van in Fan Boys.

I am happy to say that this amuses me greatly…

Hmmm… a melamine bowl and some carefully applied acrylic …and well – of course – duct tape – and I think we’d be in business!

It isn’t beautiful – this motor home -  not by any measure of the word… but it will be ours. And it will be an investment in spending time together… in family… in hanging out in the woods… and, I suspect, in solidifying and possibly even advertizing our geeky nerd pride!

Cool!

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, retro pop culture, Star Trek, Star Wars | Tagged , , , , , , , , , , | 6 Comments

Rhodes on the Road

Jordyn2.jpgI want to tell you about a young man today – not H – but another equally amazing kid. I suppose he is not really a kid anymore – as he is 17 and well on his way to adulthood.

This is Jordyn…

He is one of the students at my school.

He is smart, articulate, funny, and kind, and endlessly patient with H (and other kids too).

He and his mom have been raising funds so that Jordyn can attend the Little People of America (LPA) Conference in Washington DC this summer. They have had silent auctions, and pub nights… and they also have this FundRazr page.

JordynandMynogan1.jpgThey are driving from Vancouver to Washington, DC…

Mynogan, their cat, is going with them as well…

I admire Jane, Jordyn’s mom. She is working hard to support Jordyn with this opportunity. She wants him to feel empowered. She wants him to experience that they can set a goal and make something positive happen in their lives. She is teaching by example.

They do not have it easy – and I won’t get into the details here – because they are not mine to share – nor are they particularly relevant. The fact is – they have both been faced with challenges… and they are struggling… and they could really use our help.

Our community and our school has really stepped up. I have gone to a couple of the pub nights and sold 50/50 tickets.  I have no idea where it comes from, but I seem to have some savant-like skill with this. I can sell 50/50 tickets and I can staple stuff up straight. Ya…

The time before last, I even hugged a biker to sell some tickets. I confessed to Craig when I got home from the pub… I guess I was a little worried. He just laughed at me and told he thought it was good luck to hug a biker. So much for confession…

So Jordyn, Jane, and Mynogan the Cat are driving from Vancouver to Washington, DC., and they are going to have a fabulous adventure. There will be wonderful parts to their journey, and challenging parts as well; adventures are like that. But within that adventure lies an amazing opportunity for JordynI just know it.

I have seen the positive effects for H in attending a conference in terms of his positive sense of self and agency and self-determination and in nurturing his growing self-advocacy skills. I want this young man to have the same opportunity.

Jordyn and his mom have only a few days left on this fundraiser and they could really use our help. So I am asking for your support in sharingjane.jpg this story and, if you are able, you can make a contribution here. Seriously – even five dollars will make a huge difference.  Heck – one dollar will make a difference!

You can read more about Jordyn here and, you can support them on the road and follow their progress on Twitter @RhodesontheRoad

Thank you… from Jordyn, Jane, Mynogen the Cat, and Friends

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, Journey, Moms, Parent, self-advocacy, support, travel | Tagged , , , , , , , , , , | 2 Comments

Horror B Films, Empathy, and Indignation!

I have mentioned before that H is really into Horror B Movies and that he is working on making one of his own. H is The kid who knows who Stanley Kubrick is: Dreaming Big.

He is always working on props and effects.

So… anyway – lately he is trying to work out how to make it look like he is injured, cut and bleeding – and it involves tape (but, of course!!) and sheet metal – and ketchup packages.

woundprop.jpg

H is trying to figure out how to make fake skin over this… (and it looks like it might involve some sort of concoction of white glue mixed with acrylic paint… get out the drop cloth!)

And then tonight, as he is discussing and exploring possibilities and options with great enthusiasm this, he assures me and then queries: “Mom – this is not real – I will not get hurt – but I need to know… is this making you uncomfortable??

movieprop2.jpg

I thanked him for his sensitivity and for thinking about me. I let him know that I am interested in his project and I love his enthusiasm and problem solving. I also told him that it is not scary for me when I see what is going on behind the scenes.

What a sweetheart!

He knows I am a wimp…

Ya – too bad he doesn’t have any empathy!! [sarcasm]

And when I read this to H and asked if it was okay to post, our discussion went like this:

Me: “I am being sarcastic about the empathy part – right?

H: “Ya…”

Me: “Do you know that sometimes people say Autistic people don’t have empathy?”

H: “Really?? – That’s bollocks!”

I absolutely love it that he responds with the perfect combination of disbelief and indignance… and I will be smiling about this for a long, long time! Yes!!

 
Related posts:
Ladybugs: Autism, Empathy, and Processing Grief
The kid who knows who Stanley Kubrick is: Dreaming Big
Inventing and visual/spacial thinking: Got Milk??
Building Stilts and Resiliency

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, empathy, inventing, perspective of others, self-directed learning | Tagged , , , , , , | 4 Comments

Please… Don’t pet the bumblebees

bee3.jpgI love conversations that begin with… “Mom, here’s an interesting fact…” I can’t help but smile with anticipation and the realization that I am about to be schooled…

I don’t think I was as drawn to facts when I was a child… though perhaps I just don’t recollect this pull… because I certainly feel it now.

I also feel the pull toward the fantastic, as does H, which is more how I remember being as a child… imagining… dreaming… pretending…

I was frequently one of the last to complete my work in early elementary school. I usually knew what to do – but it didn’t hold my interest. My body was quietly working to behave in the confinement of my school desk. I was just barely contained and possibly betrayed by my bouncing knees, or the hidden stuffed elephant with silky ears who was lonely if left in the cloakroom, or my stretching-out and letting-go of the retractable threads of nylon in my often snagged leotards.

I was able to sit (relatively) still – but my mind was moving – occupied by my thoughts and winding imagination. As a result, I spent many a’recess inside – completing the work I should have done when everyone else was working.

Yes… this is how I remember being as a child… imagining… dreaming… pretending… and  most of this, the best part of this, was done outdoors  – very likely in our back yard, in the woods by our house – or quite possibly up a tree.

I distinctly remember, one evening, warily approaching the cotoneaster bush that grew against the fence at the back of our yard. It must have been spring because it was in flower it was abuzz with bees.

It was that time, near the end of the day, when the light was angled so that the sun shone with spotlight intensity upon the bush. It beckoned me – with the drone of bee-song and the dancing play of light upon the waxy evergreen leaves and the blossoms that would later become berries.

As I made my way closer, it pulled me in and I grew brave. I watched long… as was my style, and I grew convinced that this one particular bumblebee should become my friend. It was so fuzzy – like a tiny flying stuffed animal – and I was dying to hold it – and pet it – feel its softness – and make it mine to keep as a companion.

I was certain that it would understand me: that it would realize my intent, and feel safe in the knowledge that I would not hurt it.

First I let it crawl upon my finger… and talked to it softly.

I knew then, that I could talk to bees and I was certain it understood.

Then I held it gently cupped in my 7 or 8-year-old hands for the briefest of moments…

I was amazed to hold this tiny creature and feel its softness, and I opened a tiny crack in my fingers to have a peek and whisper my reassurances.

Probably 2 seconds later -  I got stung.bee2.jpg

I remember feeling shocked.

A strange combination of betrayal – misunderstanding – and embarrassment at my naivety.

I suspect there was an incredulous pause and gasp before the tears came – and I ran to find my mother to calm me and help me get over the sting.

I don’t remember that I admitted to anyone what I had done… that is until this week, some 40 or so years later,  when I shared the story with some colleagues at work – and later on with Craig.

I don’t know what made me think of it… what made me remember and share this childhood sense of self – wrapped up in this little tale – a metaphor of sorts.

I suppose I could frame this as learning about the sting of betrayal – and the risk of trust and naivety – but that is not what speaks to me. Instead, I see it as sweet and charming – and in all honesty, actually quite funny.

I still get stung sometimes.

I am still trusting – and naive – and I take people at face value. I could be tougher and more guarded – but I’d rather get stung now and then than give up that perspective.

As circumstance would have it, a bee flew in the house tonight as I was winding up this post. I told Craig I’d help it make its way back to the outdoors. He isn’t quite as fond of insects as I am.

Relieved, he said, “That’d be great, thanks!”

Then after a pause – he added with a smirk, “Just don’t try to pet it!”

Ya… well, we’ll have to see about that… because in all honesty – a small part of me remains convinced that I can communicate with bees.

I plan to continue to be the kind of person that still ponders and considers the pettablity of a bumblebee… The fact that I want to reach out my hand every time I see one reflects some of the best parts of me and that is made of win!

And for those of you who like the facts… this is a cool article about bumblebees. Here’s an interesting fact: did you know they were originally called Humblebees and there is a connection to Darwin?? Check it out: http://www.guardian.co.uk/environment/2010/aug/01/humblebee-bumblebee-darwin

Bee1.jpgPhotos: Bees on the bachelor buttons and cotoneaster in my backyard

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in ADD, Autism, bees, Communicate, trust | Tagged , , , , , , , , , , , , , , , | 19 Comments

Geek Mythology: You don’t know the power of… acceptance!

Torytraders1.jpgtoytraders2.jpgtoytraders3.jpgH wears his inner Jedi… on the outside! Ya… We’re cool with that!

Cue theme music: ♪ Da dahhh dadada da dahhh…

Related Posts:
Lego, Star Wars, and Duct Tape: A Rainy Day Collaboration
Autism, Star Wars in 3D, and A Parent’s Love of Special Interests
Harnessing the power of intense interests: MJ meets StarWars
Toy Traders Store Info   [Check it out... We love this place]

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in acceptance, ASD, Aspergers, Autism, Geek Mythology, mentor/apprentice, Play Therapy, Star Wars, Toy Traders, Yoda | Tagged , , , , , , , , | Leave a comment

“Time to Listen”: Autism and the simplicity of relationships

It is the end of my day… I am home from work. It was a good day.

I taught a little girl, who is struggling in so many areas, to tie her shoes… and it gave me goosebumps. I can actually teach anyone who can do the first step and cross the laces and loop it under and tighten it… to tie their shoes. No. Seriously. Anyone! And someday I will do a post about that… which I am stating here as my commitment to do so!

Anyway, today I got home, riding my shoe-tying high, and when I looked at Craig the Amazing I could sense that he might be on the edge of frazzled. He is working so hard as the home facilitator for H’s distance education schooling. He is doing a fabulous job… but it is hard work… some days are really hard work.

Today when I took in the look in his eye, I smiled and said, “Go… just go!!”

And I sent him off to go fishing.

He needs that… it rejuvenates him.

Just like I need to write – or read – or draw – or sing – or run away to the coffee shop sometimes…

And now H is in from the garage where he was tweaking his latest project – and I can hear the familiar stirring of Lego in the bin coming from his room.

Lego is H’s fishing…

And this… this stirring sound of  Lego… this is my calming music.

I love that sound.

I feel the tension drain from my shoulders with each successive crumbly sounding, tinkly plastic stir.

And he calls out, “Mom – What is Mary Poppins about…?”

I respond from the kitchen, “It is a story about two kids who are really struggling. They don’t behave very well and they are unhappy. Their parents are too busy and no one wants to be their nanny. Then Mary Poppins comes along and she teaches the children to find joy in being children, and she shows the parents how to notice and listen to and pay attention to their kids. Then her work is done… and they become a connected family …and Mary Poppins goes to help another family.”

H concurs, “That is what I though – the parents didn’t have time for their kids…”

My curiosity kicks in, “Why do you ask?”

“I was just thinking about it – and I wanted to know if I was right. I was! That is what I thought: the parents didn’t have time for their kids – and then they learned what was important.”

“Do you think your dad and I spend enough time with you?”

“Yes… of course. And you listen to me too.”

The stirring continues in the silence that follows. I am almost brought to tears in moments like these. I step out of the kitchen to interrupt the Lego music and stop H’s building for a moment.

I need to hug this kid!

As the calming music continues and I get rolling on tonight’s dinner plans… I can’t help but see the metaphor here for acceptance and inclusion. These are big, big things for a child to be considering: being listened to and feeling seen and being given time.

My wonderful kid continues to reveal wonderful things about how deeply he feels and processes and contemplates. I am in awe of him and his beauty and the way he can simplify complex ideas to find the truth at the core.

It is so simple really… a child can see it:

Listen to me…

Give me your time and attention…

Let me be myself and find joy in that…

listentome2.jpg

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, calm, Distance Education, Distributed Learning, Parent, relationships | Tagged , , , , , , , , , , | 17 Comments

Inclusion and Autism… leaning in

AdvanceProgram-Web-1Today at the Inclusion BC Conference, I had the opportunity to meet Paula Kluth, and hear her keynote address about inclusive practices in education.

Her message is powerful and one that I embrace: Inclusive education is the foundation upon which an inclusive life is built. She nudged her audience toward seeing inclusion as a process and to get away from seeing inclusion as a place, ie: the inclusion room (and the irony here made everybody laugh). She talked about the constant adjustment and unending work to support inclusion, and get it balanced, and raise the bar, and presume competency.

“Over, under, around, or through – find a way or make a way! Inclusion is not about a place – it is about the choices we make – it is about what we do… ” (Paula Kluth)

So these powerful messages were resonating with me as I headed up in the elevator to Ballroom D, with all of my materials, and the help of a lovely parent, Jacquie, whom I had just met and who was attending my presentation. (Jacquie… if you happen to read this – Thank you!)

I sensed I was a couple of minutes late in starting my own presentation. I was getting set up, while people were tricking in… and I was aware, as always, of the time.

I have so much material to cover in 1.5 hours.

That is a problem.

There is so much I want to share when I have the opportunity to talk about autism – I want to dispel the myth of lack of empathy. I want to give the message that social accommodations for those who process differently need to be worked on by those with the social strength as well as those with the social challenges. I want to leave people pondering whether our current paradigm is upside-down, because so often in our schools we expect those with the social-cognitive challenges to do all of the changing to ‘fit in’ to the existing system. I want to right this – and shift the paradigm so that the responsibility becomes a shared one – and so that those with the social cognitive strength do most of the work – or at the very least a fair share. I want to show how universally designed approaches can benefit students and build community within the school and the classroom, and make the case that this community and culture of inclusion supports our students. I want to share ideas that support Autistic students/students with autism and then sell the idea that these same strategies are good practice to support the social and emotional development of every child. I want people to understand the challenges that some autistic people face with understanding the perspective of others – and then in tandem with this – I want to DRIVE home the message – to consider the inherent bias – that non Autistic people are often not very willing or able to consider perspectives of those who are Autistic. I want to share that autism is not a coat of paint that is on the outside of a child like mine – but that it is a part of who he is to his very core, and that success should not be measured by the ability to pass as non Autistic. I want people to consider that denying authentic differences in processing or sensing or responding to the world is damaging to the sense of self – especially when we punish students for this. I want them considering that behaviour is communication, and to look for opportunities to use what they have learned with me as a springboard to their own learning. I want to leave people with a message that honours, and resonates, and has them questioning their practice in a positive way.

And… on top of all of this, I want people to leave with a set of strategies to use literature to teach useful social and emotional cognitive skills that will support development for their entire class in an inclusive setting.

Too much for an hour and a half… I know…

But I can do it… usually...

Usually – but not today…

Today I was stretched to get through all the bits and stories and perspectives… and frankly – I ran out of time. I was thrown… a little sideways…

…and that is okay.

When I began my presentation I explained that I don’t always use person first language – and I explained why this is the case and a bit about the neurodiversity movement. I checked if anyone had a language preference – as I am quite willing to adapt if this were going to make someone uncomfortable.

One of the participants said, “I don’t care what you use!” and then he shared “I’m Autistic.”

A young woman, who was sitting beside him added, “And I have Aspergers!”

During my presentation – this young woman, Tara, had much to share – and though it meant I didn’t get quite through everything as planned – there was something else really interesting that happened. I had the opportunity to model what I was talking about. I had to shift and change my best laid plans to accommodate others.

Educators need be mindful of this… in their word choice, movements, responses, and their actions – because ‘we teach who we are’ (a little Parker Palmer reference) – and sometimes the curriculum and our message needs to be more about our response to others than the actual materials.

I perhaps should apologize to those who were attending – that I let things slip away a bit – but this was not without consideration of something I see as being bigger and more important.

Sometimes we have to change the lesson plan – shift where we thought we were going… and we end up going somewhere that was not planned… but in the end we are all the richer for it.

There was an opportunity for Tara to read one of her poems aloud to the group when we were in the midst of distributing some of the handouts. I sensed that she really wanted to connect further and so I also let her know that I would love to chat more afterwards.

I didn’t want her to feel shut down… shushed… silenced…

If I believe in empowering the voices of Autistic people, and I do, then I had to see this as an opportunity. If I am talking about honouring perspectives and the power of inclusion… then I need to walk my talk… or it is all meaningless.

You see – I had recently read of an experience that Karla Fisher (of Karla’s ASD Page ) had at a conference. It is my understanding that the experience left her feeling like she was not honoured or listened to and that her perspective was discounted.

And this was there too – as a shadow – as I chose my words – took my steps – and did my best to honour all involved.

So I didn’t get through all of my stuff… but I think what happened was more important. Today the line between teacher and learner was blurred – and I can’t help but notice that this can be when the best learning happens… it can be tranformative!

After the presentation, Tara and I talked as I was gathering my materials, and then rather long after that in the empty room. We talked about advocacy and silencing and opportunity and other things that are not mine to share. I told her what my concern had been – that I had all of this material to get through – but that I didn’t want her to feel that she was not honoured. I asked her if she felt I listened … or if she felt shushed. I wanted her perspective – and I sensed that she appreciated my honesty is explaining what I had been trying to balance.

I wasn’t going to share here how Tara responded to my query about feeling listened to… because I didn’t want to make this post all about me… I thought I would leave it ambiguous.

But the truth is – today it was all about me.  I was the one with all of the power. I was the one in the position to listen and honour, and also to model this for others: Autistic individuals, parents, support workers, educators, and…

Part of that honouring and respect is about being willing to share the power – to give some of it away. In doing so, we give up some control; we may not get through every slide… but we create a shared experience.

So… yes, TaraTKTORME.jpg did feel listened to and respected – which is important information for me to further shape my practice and guide my future steps.

As an educator, it is critical to understand what works for others – and how my actions and responses affect them. I also need to be mindful of opportunities which may unexpectedly arise for me to listen to, support, encourage, and empower the perspectives of others.

I will be considering ways to shorten my presentations, so that there is more room to be flexible and adjust to the dynamics or needs of a particular group.

I was stretched today… in a good way. I certainly didn’t get it all right – and I think that is okay. I have said before that I am a work in progress – and that this is not an excuse – rather it is a commitment.

A final note: Our discussion and my account of my experience and learning today have been shared with Tara Torme’s permission. The poem Tara shared is embedded in this video: The Silent Meow – Asperger Syndrome Documentary and she has a book of poems and short stories available for purchase on Amazon.ca.

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in ASD, Aspergers, Autism, diversity, Educator, inclusion, Inclusion BC Conference, Karla Fisher, Neurodiversity, Parker Palmer, Paula Kluth, perspective of others, promote social understanding, Silence, Teacher | Tagged , , , , , , , , , , | 13 Comments

Falling in love with words and novelty

When H was younger we had so much fun watching this and riffing on it as a family. I think it is a pretty cool resource or strategy to use to fall in love with the sounds of language! We had a grand time mixing it up with our own words to make music on car trips or… well…  just because…

BULBOUS BOUFFANT – The Vestibules  (Rotoscope Animation)

Related posts:
Aa is for Applecus and Autism: A look back at supporting language development

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, childhood, Flexible thinking, Humour, relationships | Tagged , , , , , | 5 Comments

A Drifting Up: thoughts on intensity and shifting focus

driftingup.jpgAs I contemplate my blank screen… I hear the lovely tones of the piano drifting up the stairs from the basement.  Craig The Amazing is working out a few chords for a piece he is transcribing. He is a jazz percussionist – mostly he plays drums – but he has been working on transcribing pieces for the vibes, like ‘Killer Joe’, that he will play, amongst other works, as a part of a second tribute to Milt Jackson and Ray Brown later this month.

Craig is gifted with music. As he works… I hear the piano.  I hear the runs – and then the breaks as he pencils in the notes. A brief silence… then more beauty drifting up to me.

I lift my focus from my writing.

I listen more closely and am awed at the intricacy of what he is able to do – seemingly so effortlessly. The feeling in the music… the tone… the movement… drifts up to me and I feel the need to breathe it in and appreciate this wonderful man. I am grateful for his music. To me it embodies the beauty of who he is as a person.

Later he is working more… but this time upstairs on the computer. Now… he is transcribing Dizzy Gillespie’s ‘Birks Works’. At the keyboard – I hear the clicking of the keys and the sometimes-sigh of his concentration.

Cellargigposter.jpgI occasionally talk to him when he is there – in that place - but I shouldn’t. He is deeply focused, and if I interrupt his thought, I will only get a slightly unfocused response to a half-listened-to query.

It is like a stop-gap measure to brush away an annoying bug.  I get that!

Craig and I are the same in so many ways…

When I am deeply engaged in my own thoughts or favourite activities – I do not want to be pulled to the surface for either air or conversation. I am deeply absorbed – and then it takes me a while to bury myself back into that place or thought: the sweet spot of my focus or processing.

I was describing this to Craig:

“It is like diving for a shiny stone: taking a deep breath and swimming down… and if you can just reach it… you can get it. But if you have to swim to the surface for another breath – or a conversation – you have to sink back down to search again for that stone – and having shifted your gaze – you may never find it again…”

Sometimes the drifting up is hard indeed…

The splitting of attention…

The shifting of gaze…

The alteration of focus…

Today – however – this drifting up fills my world with beauty and appreciation in real-time for this home of mine and my wonderful family.

And I am breathing it in… and I am grateful.

Related Posts and Links:
CBC Hot Air – Featuring The Ross Taggart Sextet – Craig Scott on Drums
 
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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in ASD, Aspergers, Autism, diversity | Tagged , , , , , , , , , , , , , , , , | 2 Comments

The Cat Whisperer: Autism, Animals and Quiet Acceptance

The doors and windows are flung wide – and we are likely letting entirely too much pollen and farm dust and other outdoor things inside the house.

These days of warmth and sunshine are irresistible though.

It is tempting to let the spring in after months and months of Vancouver rain.

And on this warm May evening two neighbourhood cats have just come to the screen door…

They actually stood up on their hind legs and looked in… just like Pus’n'boots!

CanHplay.jpgSeriously – they called on H…

catstring1.jpgH abandoned his electronics and went out to play…

catstring2.jpgHe is outside playing with them still…

thatsmykid.jpgI don’t think Finnegan the Labradoodle is impressed!

cattree1.jpg

But these two cats sure are!

I quietly suggested to H: “You are the Cat Whisperer”

“Nah…” he breathed back, “I am the Animal Whisperer!”

This is not the first time I have seen this connection between H and animals. There is definitely something very special going on with this boy and his gentle heart and his ability to reach out to animals in such a sensitive way.

Tonight though… I am even more enchanted by this magical-almost-unbelievable-thing: that the cats called on H!

And too, I am certain there is something to this from which we could all learn.

I can’t quite pin it down, but I think it is about the pacing…

and quiet…

and the opportunity presented for H to take the lead…

and the time to observe and respond to the clear and distinct interests and desires of another…

and the positive power of complete acceptance…

treecat2.jpg

This THIS is joy!

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in acceptance, ASD, Autism, perspective of others | Tagged , , , , , , , , , | 8 Comments

H at 14 and 30 Days of Autism celebrate ’1000 Ausome Things’ #AutismPositivity2013

AutismPositivityBanner1Today H asked me about “Autism Positivity” and about the purpose of the flash blog. After I answered in some detail, explaining the premise and the intent, he summed it all up rather neatly:

“Oh, I get it, Mom… Autism Positivity is the opposite of Autism Speaks!”

Um… ya…

So that is the first ausome thing. Right there!

That!

H is insightful and often cuts thought the noise to find the essence of the thing!

That is AUSOME!

Autism isn’t a coat of paint upon my child – and H and I both agree that looking for a cure is an assault and an insult to who his is. He knows that he is growing up to be an autistic adult… and he is learning skills to help him transition into adulthood.

It is not easy… there are things that he struggles with that a non-autisic person would probably breeze through… But there are things about this young man that are absolutely spectacular – and some of that (perhaps a huge amount of that) is related to him being autistic.

That is AUSOME!

cardboardknight.jpgThis boy is creative – and curious. He has been building since he was very young. He can imagine and visualize and create things out of nothing.

That is AUSOME!

When he was 5 we got a new barbeque – Craig spent the day (or a fair part of it) putting it together – and H spent the day exploring and constructing with the boxes and packing materials.

That is AUSOME!

This reminds me too – that he used to call the instruction booklets that came with his Lego – the “Contructions Book.” At a time when he was struggling with conventional reading and writing, he could read these directions with an ease and visual fluency and comprehension beyond most people.

That is AUSOME!

H is still building… here you see an example of his ever-changing experimentation with the exoskeleton. This version has a moving jaw and is built with carpet roll tubes (a favourite medium these days) and Meccano pieces and washers used for the hinges… or so I am told!

exoskeleton

H is resilient. He has the mind of an inventor. He works at something with a focus and determination that I greatly admire. His creations do not always work as he imagined and he literally goes back to the drawing board and uses his problem-solving skills to try another way. Sometimes he simply finds another way that does not work… and he celebrates that too.

That is AUSOME!

He built this Ghostbusters proton pack for Hallowe’en… and used only recycled or found items (except for the spray paint and the coveralls).

Protonpack8

He recently told me, “Mom, I love my inventive mind!” I think it was the day he was trying to make a hoverboard like the one in Back to the Future.

Seriously – that is sooo AUSOME – it almost brought me to my knees!

H loves LOVES retro pop culture, sci-fi, retro gaming systems, working in the garage, tacky horror B movies, and he is an ace at doing voice impressions. In fact, he is the kid who knows who Stanley Kubrick is, and he is working on making his own horror movie… complete with all the special effects and props.

Hdirectors-board.jpg

That is AUSOME!

H is learning about self-advocacy and appreciating his own authentic Autistic self. He has given presentations within his school district, for teachers in a graduate program at Simon Fraser University, and he presented at the Arizona TASH Conference in January, 2013.Fccebookprideshot

That is AUSOME!

I am sure I could keep going on… but I want to leave space for others to share as well.

So… my final ausome point is that there are amazing and reliable resources out there if you want to know more about autism, like The Thinking Person’s Guide to Autism.

That is AUSOME!

boldlygo.jpg

images-1You can read information written by autistic people. There are books, like the Loud Hands Anthology, and there are also many wonderful and insightful blogs written by autistic adults.

You will get your best information from those who are autistic – I can promise you that!

And that is AUSOME!

This post is a part of the ’1000 Ausome Things’ #AutismPositivity2013 Flashblog Event

Related Posts:
Autism Positivity… and the motivation to reframe “tragedy”
30 Days of Autism to ‘I Wish I Didn’t Have Aspergers’: a letter to my son #AutismPositivity2012
The kid who knows who Stanley Kubrick is: Dreaming Big

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

Pinterest2© Leah Kelley, Thirty Days of Autism, (2013)

I am not the only one who has a positive perspective to share with you. Please click this button to find an entire blog devoted to reframing negative stigma and celebrating the positive aspects of autism. This project was set up by The Autism Positivity Team, a group of people who are determined to shift the conversation, including myself and some spectacular friends of mine.

Posted in 1000 Ausome Things, acceptance, ASD, Aspergers, Autism, Autism Positivity, diversity, Flash Blog, flashblog, inventing, Loud Hands, Neurodiversity, self-advocacy, Star Trek | Tagged , , , , , , , , , , , , , , , | 6 Comments

Sometimes I cringe: Leaning into my discomfort

Leaningin2.jpgSometimes I read something that I’ve written long ago – and I  cringe. Sometimes I am tempted to change a few words to reflect what I know now.

But there is a usefulness to this. It is a way of tracking how I have shifted my thinking and expanded my understanding.

Recently I shared:

My daughter is now almost 20 – so this post is close to 2 years old. Things may have changed a bit in the last two years. I can only imagine and hope that they would have… I know my perspective is always shifting and changing as I learn from my son and from the many autistic adults with whom I have the privilege of connecting. I read back and there are words I would change here and there (in many of my posts) – to shift the nuance and reflect what I know now. I am reluctant to do that though. I think it is better to show the journey and the progression of understanding on my own part… This post is a snapshot…. and I think still relevant. http://30daysofautism.wordpress.com/2011/04/29/siblings-stress-and-love-a-big-sisters-view-of-autism/

I am a work in progress – and that should not be an excuse… rather it is a commitment.

I have also recently reread writings that have never been posted – and were never intended to be. Some are visceral responses to difficult times or a lack of understanding toward my boy or others about whom I care. Sometimes my writing is raw and unpolished – and I write for me… it is a release – that is the function. Not everything is for public consumption.

It is through this looking back and through my interactions with Autistic adults that I am coming to be aware that my own ableism colours my perception. I am really trying to see – to understand – to tear off another layer of my prejudice.

I am willing to dig into this. I have to be… so I can be a part of making things different – better. I have to understand how ableism has been socialized into me so seamlessly – so that I have been unaware of its existence.

I am not autistic… I haven’t lived  judged by the world – so this has been hiding in unexamined places in this privileged perspective of mine and I have been unaware. It hits hard – because from an early age I have been raised to be an activist – a champion for human rights – to work to celebrate diversity – to work to shift paradigms and work within systems to bring about positive change – to rail against prejudice and injustice.

When I begin to peel back the layers here… prejudice is not something I expect to find within…

It makes me cringe.

I am uncomfortable… but I will lean into that.

I have to understand and examine this within my being: if I can see it and deal with it within – I will be better able to understand it and work to be a part of effectively and passionately changing it in the world.

This othering...

It is insidious… it is sneaky… I want to take a broom and sweep it away – beat the bushes and flush it out – have it gone. It is present though – in shadowed places: places that I might not examine closely – because I think I know what is there. There are things that have always been – ways of being and seeing that I have not questioned, but I am beginning to see and to understand that I need to question and examine. I cannot unsee and I do not want to. I am willing to examine my assumptions… question my truth… lean into my own discomfort … admit my mistakes.

I want to be able to proclaim, “See – I am cleansed – I have rid myself of all my ableist and privileged attitudes!” because this reflects who I want to be. But I am not there…

yet...

I am a work in progress – and that is not an excuse for my lack of understanding… rather it is a commitment to continue to listen carefully to what Screen shot 2013-04-13 at 7.29.06 PMAutistic people are saying about their experience and to work to understand and support their perspective.

I commit to this and I invite you to do so as well.

Here are some of the writings/communication by Autistic adults that have had the greatest impact on my on my parenting and my practice. Some of these have nudged me to greater understanding, some have illuminated aspects of the experience of being autistic, and all are good resources.

Quiet Hands – by Julia Bascom

The Third Glance- By E

Challenging the Usual Concept of Independence Non-speaking Autistic Advocate on Myths Surrounding Disability and Independence – by Amy Sequenzia

Autistic Behaviour has a Purpose… or How Being a Social Skills Holdout Resulted in a Richer Life – by gareeth

‘Not that Autistic’ - By

Being an Unperson (Video) – by Amanda Baggs

Don’t Mourn for Us – by Jim Sinclair

In my Language (Video) – by Amanda Baggs

Let the Gown-ups Talk (Poem) and On Failing Kindergarten - by Alyssa

Karla’s ASD Page (Facebook) – by Karla Fisher

I Was A Self-loathing FC Skeptic – by Elizabeth J. (Ibby) Grace

Timer Week  and  Way to Stim Wednesday (Videos) – by Anabellistic

Autistic Publication Pain – by Landon Bryce

What is Aspergers? A long answer to a short question – by Paul C Siebenthal

*Please note: This list is by no means exhaustive – I invite you to add links to posts that have positively influenced you in the comments section below.

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in ablism, acceptance, ASD, Aspergers, Autism, being wrong, Big sister, diversity, handling discomfort, Neurodiversity, NT sibling, NT/AS relationship, perspective of others, prejudice, privilege | Tagged , , , , , , , , , , , | 8 Comments

Dead TV and Opportunity

Deadtvnadopportunity.jpgSo… I just got a notification that today is the 2 year anniversary of this little project, 30 Days of Autism. And… I suppose here I shall admit that I am still enamored with the irony of my blog’s name and the way it is a metaphor for what I thought I was doing – but… well… ya

It seems strange to me that I hadn’t realized the 2 year mark had come.

I feel no need for fanfare. Perhaps my marking of time is changing. I don’t really know.

Perhaps I will chalk it up to the stretchiness of time and the lovely timeless feeling of getting lost in pursuing my interests.

Perhaps it is because I realize that we’ve got a long way to go to better support diversity and to understand that there are many different ways of experiencing the world and responding to it. Things are changing… but there is still much work to be done.

Perhaps it is because, frankly, I am too busy to be counting these days. I like that!

So this isn’t really an anniversary post or anything like that.

                     ~

A point of interest…

Our TV appears to be on its last legs – so to speak.

H must have picked up on this via Craig’s and my discussion.

He just randomly stated, “So… our TV is dying, huh?”

A leading question if I ever heard one…

And ya… I think I might be able to imagine where this is headed…

Oooooh… spare parts! Something new to take apart!

I love that he is so obviously calculating – like some sort of dead TV vulture… eagerly awaiting the last spark of life so he can fly in for the feed.

Or maybe just a really good recycler… and an inventor in need of more materials.

And you know what?

Craig and I most certainly will say ‘YES!’

                     ~

We are working to support this kid in appreciating his strengths and differences and the way his mind works, and we want him to understand the beauty in that.

H knows he is different, and in his short 14 years has already experienced first hand the challenges and also the negative judgment of others, including the media, and/or the tragedy/epidemic stigma of certain large organizations, such as Autism Speaks.

We want him to have the strong sense of self that will carry him through difficult times – and give him the resiliency to step up when he encounters a perfect storm of challenge and obstacle.

We want him to feel at home in the world: to have his voice heard, included, and honoured, and to have a place without having to work to pass as non-autistic.

We want him to be self-determining – and, who knows, he may even choose to be an activist (like his momma). I’d love that! He may choose to keep constructing and rebuilding and inventing… or something else not yet foreseen or considered, and – I’d love that too. Celebratediversity

I’ll keep writing here and doing my part in working to create a world where H is  comfortable and safe in perfectly being who he perfectly is and can be.

And I will continue to step over the bits and parts and creations…

And I will further fall in love with the sound of tinkering in the garage… combined with the occasional swing and slam of the back screen door and the staccato sound of running shoes on the back steps.

I’ll admit that I may, at times, avoid the basement, which I am fairly certain contains the dismantled corpses and exoskeletons and electronic innards of our most recently-demised appliances.

And through all this I will know that this is really what this journey is all about: honouring H with the space, pace, and place to appreciate the wonderous and spectacular aspects of being his own authentic Autistic self…Screen shot 2013-03-28 at 10.12.48 PM________________________________________________________

30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, autism stigma, diversity, Journey, Neurodiversity, Ralph Waldo Emerson, reframe tragedy | Tagged , , , , , , , , , , , | 4 Comments

The Spectacular Joy of Inventing

Inventing… the idea becomes the prototype… and onward from there!

H made the hot sauce for me as imagined/dreamed up the other night (see Spice of life!). Um ya… it is aptly named: Twitching Corpse Hot Sauce!

TCHotsauce2.jpgToday he is trying to figure out how to make a hoverboard (a floating skateboard like in Back to the Future) He spent about 2 hours yesterday working with magnets and a mini skateboard, and he is back at it now…

There is a lot of action – and trying and retrying – and many of his attempts do not work.

We also seem to be going through a lot of hot glue of late – and frankly – so much tape that I can’t help wishing I had investments in 3M.

At one point today he asked for help getting “this sticky stuff” off of some of his magnets. It actually turned out to be metal filings that I had acquired for him to play with using his vast magnet collection. I explained that it wasn’t sticky – just magnetic – and helped him to plan how to remove the tiny bits of metal from his magnets.

When I came back into the kitchen a few minutes later – he was now busy folding these metal fragments into something.

MagneticSillyputty.jpgBarely containing my smirky giggle of appreciation, I query: “What are you doing now?”

“Mom – I am making magnetic silly putty”

“Cool – Does it work?”

“We’ll see…”

H fiddles with this for a while… then satisfied with his interlude of discovery (Yes… it did work) he is back to working on his hoverboard prototype.

Apparently now H is making a pedestal… a requirement, according to him,  “to make it float… well… I hope so…”

I have no idea what’s next – but I have to celebrate this kid’s trouble-shooting way of thinking, and appreciate this is a huge strength that has the potential to take him far indeed. The perseverance and curiosity are his, but what we can ensure as parents, is the time and the space and the pace for him to delve into his interests.

Inventing is one of H’s strengths, but it is one that is also being nurtured. He is spending thousands of hours doing the kind of thinking that brings him joy. We are working to provide him with the opportunity to do so with intensity – and to do so in a way that allows H to be at the helm.

Every child may not have H’s skill in visual/spacial perception, or his interest in problem solving, but every single child has areas of relative strength. What I am learning is that a strength-based way of viewing and appreciating H’s skills and way of experiencing the world is something that we need to focus upon for each child. When he is surrounded by the things that interest him, he does his best learning.  I hear him say things like: “Hopefully it is functional” and then if it isn’t – this kid is seriously headed back to the drawing board.

Inventorswork.jpgAnd as H is cleaning up – I am wondering where he might sleep tonight based upon the look of his bed, which seems to have become the recent depository for some of his projects. I draw back my urge to rein it in… and repeat my mantra: “This. This is his work…”

Keep on inventing H!!

And right at that point – H says to me, “Mom, I love my inventive mind!” and I am almost brought to my knees with the power of this proclamation!

YES!!

TCHotsauce3.jpg________________________________________________________

30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in ASD, Autism, diversity, Flexible thinking, inventing, Resiliency, self-directed learning, Space and Pace | Tagged , , , , , , , , , , , , , | Leave a comment

The kid who knows who Stanley Kubrick is: Dreaming Big

Hdirectors-board.jpgI hope it is a good movie. It is going to be a bit corny – but it should be good. Mom will you help me??

Yes, you get things going and set up and then let me know what I can do. I will help you.

A gathering and organizing of homemade props and materials ensues. H has been working on this for weeks and weeks. Rummaging… and again overtaking the dining room table with his creations, he is getting things lined up… sorted… prepared. H is making a movie.

I rein in my tendency to want things in order. Not perfect order – I am entirely comfortable in my own mess – it is other people’s mess that I find overwhelming. I remind myself that this is his work. We are honouring his creativity and self-directed learning and interest and drive.

This is the kid who knows who Stanley Kubrick is.

A while back, H was talking to me about some sort of invention in the car as we were heading somewhere. I started to tell him that his idea was impossible – then I caught myself. I admitted: “H, I was going to tell you that was impossible – but I am going to rephrase that. Never let someone like me tell you that something is impossible. Dream big – and don’t let people put a lid on your imagination and inventive mind, based on either current technological limits, or their capacity to share your vision of an imagined future.”

We watched Star Wars together on video last week. The tracking was a bit sketchy in places, as this is the 1980s release. H entreated, “Mom – this is cool – we are kicking it old school. See – this version is not even called ‘A New Hope’. It is just ‘Star Wars’. It is a classic.”

If you asked H about one of his favourite directors, George Lucas,  he’d share: “I know he is not making movies anymore but he still is good. He made Star Wars and Indiana Jones and his imagination is amazing and futuristic.”

So last week… when we watched Star Wars, we had the chance to look at how the technology has changed and to discuss the way that Lucas anticipated this and was able to plan for it to catch up with his ideas of what was possible. This related so well to the conversation we had about not limiting your imagination based on what seems possible. I think another door opened for H… I could almost see the wheels turning.

This week he is building – constructing – planning – problem solving. He is using tools – trying to teach himself to weld – learning about programming – and editing.  To be honest, I can barely keep up – and I sure don’t want my lack of ability to do so to hold my boy back.

The best thing we can do for this kid is to support him in perfectly being who he is perfectly able to be.

He is a kid who know about the likes of Stanley Kubrick, Steven King, Alfred Hitchcock, Steven Spielberg and George Lucas. He is interested in movies and movie props and retro pop culture. He is fascinated by the special effects and behind the scenes happenings in movies and he has a real pension for and a mind-boggling knowledge of classic horror B films.

A little later, I again query: Is there anything I can do to help?

Yes – you can be a good actor.

Yikes… I am most certainly out of my league…

Screen shot 2013-03-20 at 8.32.39 PM

Related Posts:
http://emmashopebook.com/2013/03/20/splinter-skills-and-other-words-we-use/ (*** This is a brilliant post)
Inventing and visual/spacial thinking: Got Milk??
Building Stilts and Resiliency
Silliness and Invention at the End of a Long Week
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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, internet, limits, Moms, Social Thinking, typical, Vectors of Autism | Tagged , , , , , , , , , , , , , , , , | 12 Comments

Spice of life!

Tonight H was quizzing me about my love of hot food, as I was adding chile sauce and cayenne and chopped raw jalapenos to my dinner. Ya… I like spicy…

He was thinking and imagining and explaining that he was going to invent the perfect hot sauce for me. Apparently, it will involve, among other things, Habanero peppers and the use of the blender.

He is thoughtful like that.

And, get this, it will be named ‘Twitching Corpse’

Brilliant!!

I love this kid and so appreciate his thinking and his sense of humour!

I offered to design the label!!

I can’t help but wonder, though…  maybe he needs to become good friends with a patent attorney.

Twitchingcorpsehotsauce2.jpg

Related Posts:
Inventing and visual/spacial thinking: Got Milk??
Building Stilts and Resiliency
Silliness and Invention at the End of a Long Week
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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, inventing | Tagged , , , , , , , | 5 Comments

Autism Awareness… Let’s spread understanding

At barely 14, H is already sensitive to what others are saying about autism and he often feels uneasy and personally threatened by representations of autism in the media that are framed as tragedy and epidemic. I have previously written posts about that – about the need to reframe tragedy – and about how these layers of autism stigma go deep and affect my child to the core.

So here is a little message of Awareness to consider, along with a request for empathy, as we make our way toward that month of April.

Be Sensitive...

Related Posts:
Preoccupation with another layer of autism stigma: Crap…this goes deep!
H and Ari Ne’eman: A Virtual Conversation
30 Days of Autism to ‘I Wish I Didn’t Have Aspergers’: a letter to my son #AutismPositivity2012
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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in acceptance, ASD, Aspergers, Autism, autism stigma, empathy, Humour, perspective of others, reframe tragedy, Shame | Tagged , , , , , , | 8 Comments

Heart of the Festival: Vectors of Autism

Vectors of Autism: A Documentary about Laura Nagle was screened at the Sedona International Film Festival last week.

Yesterday it received the  Heart of the Festival Award!

I find it beautifully metaphorical that when our film about autism didn’t quite fit in, the festival created a new category so that Vectors was honoured for its sensitivity and its powerful message without changing a thing.

They accommodated our film and created a whole new award.

Now we just need a little more of life imitating art…

Heartofthefestival.jpg

Below is a link to a video of Laura and John receiving the Heart of the Festival Award. Go to 30:15 for the best part!

http://www.youtube.com/watch?feature=player_embedded&v=Ow4pguxNjy0

Related Posts:
Vectors of Autism: Wowing the Sedona International Film Festival and the AAIDD
‘Dear Teacher: A letter from H’ …Listening to Autism 13-year-old Style
Vectors of Autism and Alone Together: thoughts on extending social understanding
Be the Change… Vectors of Autism at the SFU Alone Together Film Festival
Vectors of Autism: A short story of the Premier
Supporting Diversity: The Vectors of Autism Project
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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Arizona, Autism, diversity, Documentary, fitting in, Laura Nagle, Neurodiversity, Purchase Vectors of Autism: Laura Nagle, Vectors of Autism | Tagged , , , , , , , , , , , | 6 Comments

Autistic people are… teachers!

Autistic people are wired differently and think differently from those who are not Autistic…  and that is a strength that can make them innovators, and broaden our perspective.

Our world needs more of that…

Autistic people are able to contemplate an interest with absolute focus… and if we follow their lead we can remember how to find joy in Lego or Jazz or math or the movement of a a piece of string.

Our world needs more of that…

Autistic people are known to perseverate and that perseverance can make them wonderful and resilient problem solvers.

Our world needs more of that…

Autistic people are sensitive… sensitive to their surroundings, to sensations, and to emotions. If we follow their lead we can respond with greater understanding.

Our world needs more of that…

Autistic people are teachers… if we are open to their perspective and listen to their communication – whether it is spoken language, writing, art, music, action or behaviour, we can learn about another’s experience. Our world needs more of that.

It is time to be open to learning…

Our world needs more of that…

Celebrate Diversity- tulips

This post is a part of the Autistic People Are... flash blog. The focus of this is to work as a collective force to shift and change the Google search engines so that those who seek information are met with messages of empowerment, respect, and acceptance. We need to work to shift the negative messages that are so sadly prevalent about people with autism/autistic people. There is work to be done to reframe autism from tragedy and an epidemic needing a cure or a fix – to understanding that it is a part of the continuum of diversity, and though there may be struggles and challenges, there is also immense strength and beauty.

 
Related Posts:
Autism Positivity… and the motivation to reframe “tragedy”
http://autisticpeopleare.blogspot.ca/p/postroll.html?spref=tw
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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, diversity, Flash Blog, promote social understanding, Teacher | Tagged , , , , , , , , , , | 3 Comments

Easy Silence Part 2: The Yin and Yang of Privilege and Empowerment

I have been reflecting on privilege… and perhaps entertaining the loss of it as we work to find our place and way to support others in the autism community.

I have been raised with privilege (not riches and extravagancesee the link at the end of this post to learn more about this). Although I am in my late-forties and have occasionally felt the sting and squeeze of sexism, or the judgment of others in dealing with low mood and depression, I have not suffered abuse, nor have I been silenced because of my neurology, or my ethnic background, or…

That sense of privilege has a shadow… and the shadow is the assumption that I have the right to speak up – to say my piece – to be heard… and I am coming to realize that this attitude may actually silence or dilute or diminish the message of others.

I am trying to be aware of this so that I do not assume the same privilege when I am interacting with Autistic adults. If I am working to empower the voices of others – I may need to be willing to make my own subordinate. If I am sensitive to this…  I may feel silenced… I may need to silence myself.

This feels uncomfortable at times… I am learning to make peace with this discomfort. It may feel like I am being silenced by those I am trying to support… and it may even feel like there is an irony to this.

But this is not about me.

I may feel misunderstood at times… I need to carry on regardless.

Sometimes I may want to jump in to try to repair a misunderstanding – or to explain… but the difficulty is that doing so can seem dishonouring to others.

So I am learning about my own silence.

I am learning to embrace it… and to understand that my discomfort is deepening my understanding of the experience of others… and I also acknowledge that this is merely a glimpse of their experience, and that I cannot fully understand.

And within all of this I know that this is still not about me.

There is a deep questioning about my assumptions, and in my quiet I see there also exists an opportunity to reframe my experiences and question what I have held to be truth as a subjective reality. I am open to examining this.

I am shifting and changing, and my response to being misunderstood is now sometimes a quiet one. To rail against the perception of others can seem like silencing their perspective… the very perspectives that I want to honour.

If I want to make things different… I need to be willing to take the blast. Sometimes it may be because of something I did or said, and inversely, sometimes it might be because of something I didn’t say, and my silence was interpreted as complicit. Sometimes it has been because I wanted to support others and extended support in two opposing directions.  There is no easy path that I can see… there is no way to get it all right – every time.

I am coming to accept that I will not get it all right. I am learning that as passionate as I may be about supporting others and working to create a world that is more supportive of diversity… there will certainly be mis-steps and some of those will most certainly be mine.

And I am learning that there is a yin and yang to voice and privilege. I may experience less power to my voice… I may perceive less privilege in an interaction… fewer rights to have my perspective understood… but the space left with my silence – may be the space needed to allow for the action and empowerment of others.

And I am working to be open to that…

Related Posts:
Easy Silence: I am still learning to communicate
Autistic Advocacy, Jokes and Silencing (Please read this important post by Brenda Rothman at Mama be Good to learn more about Privilege)
 
YinandYangtovoiceandprivilege.jpg
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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in acceptance, ASD, Aspergers, Autism, being wrong, diversity, Neurodiversity, neuromajority, Neurotypical, perspective of others, privilege, Silence | Tagged , , , , , , , , , , , , , | 8 Comments

Autistic people should…

Today is the ‘Autistic people should…’ flash blog.

Here is what H wanted me to share:

autisticpeopleshould.jpg

Please check out the other amazing contributions at: http://autisticpeopleshould.blogspot.ca/

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in acceptance, Autism, Autism Positivity, diversity, Flash Blog | Tagged , , , , , , , , | 4 Comments

Appreciation for my school district and colleagues

withappreciation.jpgI have to send a shout-out to my school district and colleagues for their wonderful reception and response to my keynote address for our Student Services Training Day. I love presenting, and do so rather often – but today was different. It is different, and I suspect more difficult, to present to your friends and colleagues.

We brought the voices and experiences of Autistic adults into the room today by screening the film Vectors of Autism: A Documentary about Laura Nagle, and we were also given an illuminating glimpse into the perspective and experience of one future Autistic adult. Thank you, H, for sharing your presentation Dear Teacher: A Letter from H with this group of educators! You did a fabulous job!

Thank you to these educators for being open to the message that we consider a shift in paradigm… so that those with the social-cognitive strength are doing the work to accommodate students with diverse learning needs – rather than expecting those with the challenges to do all the changing to ‘fit’ the system. There is an imbalance here… and today we were able to examine that… and I know we can work to build that social and communication ramp together!

Thank you to all who were present, for engaging with perspectives that honour students where they are at, and for your work to empower our student’s sense of agency, self-determination, and personhood, and to support them in building their advocacy skill.

Thank you for sharing a positive vision of inclusive practices. Your nods of ascension were evident at the notion that we should not be punishing students for their disability or challenges, and that there is merit in reframing response to behaviour as response to communication. Today we shared the vision that we can accept our students for who they are in the moment, and then move on and build skills from there.

Thank you for your tears, misty eyes, or heartfelt comments, all of which revealed how deeply you were moved during H’s presentation.  I passed the comments on to H, as requested, and though he said little, I could see the pride shining in his eyes.

And the break-out sessions…  those who spent the balance of our day with me discussing autism and perspectives of neurodiversity in greater depth… I must thank you as well.

Thank you for sharing the connections that you made today and for your appreciation of the messages and perspectives presented. I closed the keynote with this quote from Tim Gallwey… a message that I trust will resonate with many.

TimGallweyrose.jpg

From my perspective, today was a win for neurodiversity, for our students, and for all us as educators. I am so excited and proud to be working with you to broaden our perspectives and share and deepen our understanding for our students and their experiences in our school system.

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in acceptance, ASD, Aspergers, Autism, Autism Positivity, diversity, Documentary, HFASD, inclusion, promote social understanding, Public Education, self-advocacy, Special Education, Teacher, Vectors of Autism | Tagged , , , , , , , , , , , , , , | Leave a comment

Perspectives on Perspectives… Musings and more…

I am presenting at the Student Services Training Day in my own school district this week. I have been given the honour of putting together the keynote address and will open with H’s presentation ‘Dear Teacher: A Letter from H’ and then a screening of the fabulous film, ‘Vectors of Autism: A Documentary about Laura Nagle.’

Following this, I have about 30 minutes left to address this wonderful group of educators, colleagues, and friends, consisting of Resource Teachers, Learning Assistance Teachers, SLPs, OTs, PTs, Counsellors, ESL, ELL, ELD Teachers, and more.

The keynote will be followed by a variety of breakout sessions. The session I am facilitating is entitled  “Autism: Thinking About Perspectives”  …which is pretty much what I think about… almost all the time.

So now I’m working in my favourite Starbucks – ostensibly – readying my presentation. I have an amazing opportunity to positively influence educators and their practice, and to share perspectives to assist them in supporting both regular education teachers and our neurodiverse students.

I find myself carefully choosing my words and message.

I am fueled by excitement, a few nerves, and… well… caffeine!

I should be working on my presentation right now instead of writing this post… but I have a certain trust in my process and that this emergent need to write may serve to focus my thoughts.

My thinking has been nudged by two things of late.

The first is my reflection on a wonderful day we had yesterday. The Amazing Craig, H and I headed off to the river to meet up with a lovely family we had recently met. They live close by and also have a son on the autism spectrum. Our discussions with them had led us to believe that our boys had many interests in common and might really connect.

It was a lovely day! The boys had a great time. We all did!

Hriver

Rocks and sticks and water and mud and ice and space… lots of space!

The boys interacted and then drifted in and out of time alone – with a rhythm of long-time friends and no questions asked. H waved sticks about and enthusiastically yelled his pleasure at the freedom of the outdoors. The other boy, K, was a little more reserved in terms of wild abandon – but he judged not and was completely unphazed. He too is a lover of all things stick and rock and water and ice!

KHriver

It was a social dance, with built-in breaks, solo time, and shared experience, and they both intuitively knew the steps.

kriver

There was no mystery as the interaction unfurled in its own lovely, unassuming, and entirely accepting way.

And this brings me to the second of my nudgings: a brilliant post by Musings of an Aspie, A Little Perspective on Perspective Taking.  Here is an excerpt – but please return later to read the entire post.

“Experts say that Autistic people don’t realize that others have thoughts that are different from their own. If we’re talking about Autistic adults, this is just silly. Of course we know that other people have thoughts that are different from our own. We don’t always have a good idea what those thoughts (or feelings or motivations) are; for better or worse, we make assumptions based on our own thoughts, feelings and experience.

Allistic [a term meaning 'not-autistic'] people do the exact same thing. Luckily for them, the majority of people around them are also allistic. By default, the odds are quite high that they’ll make a correct assumption about another person’s perspective based on their own perspective. And when a non-autistic person makes an error in perspective taking, we don’t say they’re impaired, we call it a misunderstanding.

If an allistic person tries to take the perspective of an Autistic person based on their own thoughts, motivations and experience, the results can be wildly off the mark. A good example is when teachers and caregivers treat meltdowns as an intentional behavior designed to elicit a specific response. Equating a meltdown with a typical temper tantrum is a massive failure in perspective taking. So much so, that from an Autistic perspective it would be funny if it wasn’t so sad and harmful.” ~ Musings of an Aspie

Now… the trick for me will be to get these ideas across in my presentation… to encourage this fabulous group of educators to consider things from a different angle… and to consider multiple potentially new perspectives… so that they are better able to support neurodiversity in our schools.

Small steps… and giant steps too…

Next steps!!!

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in acceptance, ASD, Aspergers, Autism, perspective of others, Space and Pace, Special Education, Speech and Language Therapist, Vectors of Autism | Tagged , , , , , , , , , , , , , | 4 Comments

Vectors of Autism: Wowing the Sedona International Film Festival and the AAIDD

I have BIG news to share…

Vectors of Autism is being screened at the Sedona International Film Festival on February 26th and 28th.

Oooooohh, I so wish I could be there!

Unfortunately, that is not in the cards… but perhaps you are not as far from Sedona as I (Vancouver). Perhaps, if you are able, you will don your fancy duds and glittery bits and consider attending in my stead. That would be cool!

If you are interested in attending, you can find more information about the Sedona International Film Festival here.

Vectors of Autism poster

But WAIT… there’s more…

The AAIDD (American Association on Intellectual and Developmental Disabilities) has just announced its selection: Vectors of Autism is to receive the 2013 Media Award!!

Here is Laura’s response to the news:

“I opened an email today to find this salutation and first paragraph:
Dear Laura,

Congratulations! It is a great privilege to tell you that the American Association on Intellectual and Developmental Disabilities has selected “Vector of Autism” to receive the 2013 Media Award. We are truly pleased to recognize significant achievements and many contributions to the field of developmental disabilities.

That is exciting!

A small group of us came together over a year ago with the goal of producing a documentary about adult autism. Our purpose is a good one; we are out to change the world, if only a little bit. There are films about autism as it appears in children. Far fewer films show autism as it might define an adult’s life. This one does. Further, it portrays autism as neither a horrid gobbler of souls, nor as a fun romp in the park. We tell it is it is, and I think we tell it very well.

What began as a simple documentary became a bit more than that. The film has some rather nice animation that adds to the look of the film while also being part of the visual explanation of autism. The musical score is just wonderful. We are proud of our work, and now see that our film is appreciated. Thanks to all! onward! A better world!

Take a look at the trailer, and some details here: http://lauranagle.net/Film.htm …”

HandLaura-Phoenix

H asked me to add: “Vectors of Autism is a great film! Everybody should see it and it deserves an award. That is a great picture of me and Laura. She is awesome, and we both like Star Trek. Live Long and Prosper…”

 
Related Posts:
‘Dear Teacher: A letter from H’ …Listening to Autism 13-year-old Style
Vectors of Autism and Alone Together: thoughts on extending social understanding
Be the Change… Vectors of Autism at the SFU Alone Together Film Festival
Vectors of Autism: A short story of the Premier
Supporting Diversity: The Vectors of Autism Project

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Screen shot 2013-02-09 at 2.23.07 PM30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Arizona, ASD, Aspergers, Autism, diversity, Documentary, Laura Nagle, Neurodiversity, Purchase Vectors of Autism: Laura Nagle, SFU Public Square Alone Together Film Festival, Vectors of Autism | Tagged , , , , , , , | 2 Comments

Welcoming Dissent… Self-advocacy, the communication hierarchy, and rethinking tone

My thinking and learning around the ideas and concepts of self-advocacy is being nudged by the work I am doing supporting educators in their inquiry projects in a Graduate Program entitled, Supporting Diverse Learners. I have been explaining the importance of supporting their students in developing self-advocacy skills, and I have been sharing what I am learning from supporting my son, H, in his own self-advocacy journey.

I have been reinforcing that before they can advocate for themselves, their students need to develop self-understanding and a way to express that understanding. And then I have gone on to explain – particularly to the special ed teachers – that they will have to advocate within the school for these children. They will need to support the other teachers in developing the understanding to, in turn, support these students in their journey to advocate for themselves.

We have to be willing to ignore tone… and instead focus on intent.

Here’s the thing – sometimes when a child like H is stressed or overwhelmed and doing all that he can do to keep it together – and then is able to say what it is he needs – well, in that moment – very often the tone of his communication could be interpreted as rude or abrupt. This is difficult because I think adults have a tendency to just hear and respond to the inappropriate tone – instead of hearing the message.

I suspect we assign tone completely too much power:

ToneHierarchy2

For many adults, this means that there exists unspoken rule or hierarchy of socially acceptable etiquette in terms of speech – and rude tone has the power to completely cancel out our willingness to listen.

I think we often to respond to the tone more quickly than to the content – and for our students with social communication issues – we need to be aware of our own tendencies to make unhelpful judgments. We, as educators (and parents too), need to open ourselves up to being more aware of the intent of the communication.

ToneHierarchy3

My son is learning to speak up for himself… but many times when he is at the point when he needs to do so, he has already become to feel stressed or overwhelmed by a situation. At these times – H (and others) may not be able to state what he needs sweetly and politely.

H may not yet sing his advocacy…  but just because he cannot sing his words… doesn’t that mean his voice should not be heard!

I know this is not easy.

Admittedly, I struggle still… and I am willing to reveal that I am perhaps – or rather, likely – a hypocrite.  It seems a tricky messy thing to unwind the tightly tangled ball of teenager from self-advocate. It is a developmentally appropriate desire to disengage and to separate from one’s parents and begin to seek identity wholly one’s own. Rebellion – and sometimes cheekiness are typical – if rather unappreciated – but this is different from advocacy. H is working on the delineation of self; where he leaves off and others begin. At the same time, it is in this very space where he interfaces with the world, where he is working to embrace with pride the things about him that make him different, and have the self-understanding to be able to self-advocate.

Aaaack!! I certainly haven’t got this one figured out…  but I am determined to work to honour the message of my child and strive to listen beyond the tone…

Related Posts:
The link between self-understanding and self-advocacy

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, Communicate, limits, promote social understanding, self-advocacy, Special Education | Tagged , , , , , , , , , , , , , , , | 4 Comments

TASH Conference Keynote and a fortress of chips: H Rocks his Advocacy

Keynote2 In front of the entire conference stood a 14-year-old boy. He’d eaten little during lunch – perhaps it was nerves – but more likely it was the lack of anything the least bit palatable or familiar to his tastes. However, he had taken multiple bags of chips from the lunch buffet, and had them placed around his spot at the table like a small crispy fortress. I considered admonishing him that this was not a healthy lunch – that he couldn’t eat all those chips.

Instead I leaned in and whispered, “You are going to be fabulous!” and he favoured me with a glance and a shrug and then returned his focus to his iPad. I somehow convinced him to wipe the tiny traces of dorito-red from around his mouth without heightening his anxiety – or revealing mine; a layering-in that is never helpful.

Then it was time for the keynote address. He rose… and headed to the podium where he was being introduced by his good friend, mentor, and fellow self-advocate, Laura Nagle. I wondered fleetingly if he would change his mind… but up he went.

Now he stood there – tiny white remote in hand – waiting for just a moment – before he plunged right in. He caught my eyes right then – and I gave him my barely perceptible you-can-do-it smile and nod combo. In that moment… the room was silent – waiting.

Then he began, with a voice a little deeper than it was 5 months ago,  reminding me that adulthood is perched on the horizon. He spoke with a growing confidence as he gained momentum, and clicked his way through the slides of his presentation.

H opened with:

Dear Teacher: A Letter From H

Sometimes I make mistakes…

I need you to help me…

He shared about his sensory experiences

Sometimes I hear everything at once… and a lot of noise is overwhelming

When I listen to music I hear everything at once… that is great for listening to music

– but it can be hard in a classroom.

Hearing everything in the classroom means that:

Sometimes I could hear everyone in the class breathing and it went over the sound of the teacher speaking

This makes me anxious…

I need you to understand that this doesn’t mean I wasn’t listening… or that I was misbehaving.

He explained the intensity of his emotions, and talked of anxiety, resilience, communication, friendship, special interests, and more. He talked about his experiences and perspective and expressed what it is he needs from others in terms of support.

I need you to encourage me to stick with it… this gives me the message that I can do it and that you believe in me.

Your actions give me messages that teach me about resilience

I need you to notice the little things I do right instead of the little things I do wrong

His message was powerful:

I am a kid right now… but someday I will be a grown-up
Please help me build understanding in our world…

As he finished there was a huge applause…

And then, as H looked about a little uncertainly, the room entire went astonishingly quiet…

He sat down again behind his crispy fortress – perhaps not quite understanding the full measure of his message and the almost reverent response to the enormity and power of his offering.

And too… I recognized his quiet stance of pride and empowerment.

The silence was expectant – and his unassuming response perhaps almost anticlimactic. Clearly people wanted more: to talk to H, and interact, and share their appreciation… but he was done. People were sensitive to this and gave him the space he needed.

I again leaned in, “You did it! Wow! That was wonderful!”

H seemed a little taller than he had just minutes before, as he single-nodded his head in silent agreement… and he focused once again upon the iPad.

~

A bit of background: In mid January H and I had the honour of participating in the Arizona TASH 9th Annual Conference on Inclusive Practices (also sponsored by AzWINS).  We flew from Vancouver to Phoenix and then settled in for the conference. We were met at the airport by Laura Nagle and had the lovely opportunity to hang out with her and other amazing people, including Sir Max and Susan Marks, aka @LifeAgitator on Twitter and producer of the wonderful documentary, Vectors of Autism.

We had the opportunity to meet and connect with some wonderful online colleagues – in real life, and I was delighted to have to opportunity to present on Literacy Strategies for Supporting Social Understanding and Perspective Taking designed to be used in an inclusive general education setting. (Yes. I am a big fan of UDL)

This AzTASH conference was H’s second. He was invited to participate as a self-advocate, much the same as last year, but this year there were a few differences.

H participated in two of the I am Norm sessions facilitated by Kristen Dougherty. I wanted to be there – but the program was designed for youth and I thought H deserved to be there without his mom at his side. (Although – I must admit – it wasn’t easy for me…) Thank you to Kristen for her wonderful support and skills of inclusion!

The other was that H was invited to do the lunch-time keynote address for day two of the conference. He presented Dear Teacher: A Letter from H, which he has presented to educators in a graduate program at Simon Fraser University, and also to the staff at his own school.

FccebookprideshotPresenting in front of the entire conference was not easy for H, but he did it – and he did it very well. After his presentation he was pretty much out of spoons and needed time to pull back and get his footing. I am certain, however, that this positive and empowering experience will be something he carries with him and will resonate on many levels as he continues to develop his sense of self and advocacy skills.

I’d like to express my appreciation to the wonderful people at Arizona TASH for inviting me to present, for including H as a self-advocate, for your gracious welcome and hospitality, and for the amazing work you are doing to change the world!

Thank you!!

Related Posts:
‘Dear Teacher: A letter from H’ …Listening to Autism 13-year-old Style
The Amazing Arizona TASH Adventure: A Roadtrip with H – Part 1
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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Arizona, Arizona TASH, ASD, Autism, Communicate, inclusion, Laura Nagle, perspective of others, promote social understanding, Purchase Vectors of Autism: Laura Nagle, self-advocacy | Tagged , , , , , , , , , , , | 9 Comments

The link between self-understanding and self-advocacy

I can get very excited about the topic of self-advocacy.

I am supporting H in his journey, but as I support his learning there are a number of things I have been pondering…

Opportunities to develop self-understanding:

I think part of the work that needs to be done in supporting H in becoming an effective self-advocate is that he needs to be given opportunities to develop self-understanding. I am tireless in my efforts to help the world better understand a child like mine and be responsive to and understanding of his perspective, as someone who experiences the world differently.

More than this, though, he needs to understand himself and the way that he experiences and processes emotions …or sensory overload …or too much language …or a large crowd …or – well frankly – the list is long.

This goes beyond self-awareness, because to truly advocate for himself there are certain things he needs to be able to do:

he needs to understand how his needs might be different from others

and then be able to explain this to others

and feel justified and empowered to ask for or explain what it is he needs

This self-understanding also extends to areas of strength…

H needs to be supported in understanding his talents and abilities in order to have an accurate vision of himself in terms of what he has to offer. He needs the opportunity to see the value of certain traits that will be potentially very useful throughout his life.  For instance, his depth of knowledge in his multiple areas of intense interest are a definite asset. He needs feel confident to be able to share that he has a certain spacial wizardry, evidenced in his amazing ability see possibilities and to create new things out of old.

If he has a good understanding of his strengths then he will be better able to advocate for himself so that his is able to make the most of these, and so that he is able to create or take advantage of opportunities for himself.

This is so much to expect – a lot to expect… but not too much.

H has just turned 14 – and adulthood is closing in fast. This used to worry me in a nagging way, but now I have mostly abandoned my forward-looking-fear of the future. Instead I am embracing a vision of H as capable and able to make his way in the world. I am really excited by the possibilities I see for my awesome boy – and for his emerging advocacy skills.

I still don’t know where this amazing journey with my child will lead. It is impossible to know the future, but I am convinced that working to support H in developing his understanding and appreciation of himself and his ability to share that with others will help him to be fulfilled as he moves into adulthood.

Related Posts:
Welcoming Your Dissent: A Poem
Strengths, Stretches, and Autism: More Lessons from the Thrift-Shop
Yours, Mine and Ours: autism, self-advocacy, and setting limits
‘Dear Teacher: A letter from H’ …Listening to Autism 13-year-old Style

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, Journey, self-advocacy, worry | Tagged , , , , , , | 5 Comments

Code: A Woman with Aspergers, Empathy, and Poetic Response

Dear H: for those of us to whom words
sometimes do not easily run, saunter, or even
amble: we speak in code. We think in code. We
construct our languages painstakingly
like little Tolkiens, separated by time, distance, and space:
but the Hobbits and the Elves ain’t got
nothing on us. We have the dexterity
of pictures, objects, or even
moving film to send messages to world,

or even to our own selves. Like
ladybugs made of burnished cinnabar
inlaid with little obsidian gems, loud like volcanoes,
each careful crafted by a God hand
and set loose to fly away home: these
little three-dimensional living hieroglyphics
exist so that your neighbor Mrs. L
can hold her place in time and never collapse
or fold up inside forgetful darkness. Or like

little goldfish that represent your great grandmother
in your dialect: I see them, made of amber,
or made out of mother-of-pearl and then
lacquered in the gold resin usually reserved for
rebuilding the broken bodies of cracked-apart
teacups. And after the repairs, those teacups
are bequeathed with a new set of gilt, gleaming veins
in their skins.

I have heard some say that we are broken.
Busted up toys.
Dolls that do not speak when their strings are pulled
or even worse, that wax loquacious like
caffeinated rivers preaching single-subject gospels
to the world. Little toy cars that only drive
to a single destination. Action figures content to
line up their weapons according to size and function
when no one is looking. But no one ever looked closely
to see the veins of gold in our skins
that hold us together: I found mine when I was
thirty-four years old. And you, you are a
superconductor, transmitting plans for mechanical arms
made from K’nex and Lego iPod holders
from brain to fingers, manifesting
solid creations from invisibility. Just like
I manifest poems from the unseen code books
in my brain.

It is at best, ignorance, or at worst, arrogance,
to assume that a language unknown
or unable to be decoded
communicates or means nothing.
Maybe you have heard of the Navajo code talkers
of World War II: their modified dialect of code
was so sophisticated that even a captured Navajo soldier
who didn’t know the code told his interrogators
that the transmissions he heard sounded like
nonsense. Your symbols, my moving picture poems,
and the language of every other autistic,
are electrified with all kinds of color, and so
I offer a toast to you, my young friend:
let us keep speaking in code as long
as we walk this Earth. Our languages are not mistakes,
or broken syllables, or to be dismissed as mere
unintelligible nonsense. They simply need our translations
to be understood.

Written 12/14/12
© 2012. Nicole Nicholson. All Rights Reserved.
(Reprinted with permission)
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This poem, originally published at Raven’s Wing Poetry, was inspired by a post at Thirty Days of Autism in which the author speaks of empathy and how her son uses physical objects to represent people in his life who have passed away, so that he may remember them. Because the nature of autism and how it manifests can be so specific to each person, it made me think of how each of us can have our own codes — or languages, if you will — to express ourselves. The post struck me so much that I felt the need to write this poem.  ~ Nicole

~

Dear Nicole,

H and I are both honoured by your poem, Code. I read it to him tonight. He thought it was beautiful and gave you a rather unpoetic14-year-old thumbs-up and the full-faced squinty smile that silently speaks his pride and appreciation. He stood taller at the final lines… and was clearly moved to feel so understood, and further, he was amazed at the mystery that you understood him with such depth.

Thank you for this…
for reaching out…
for making the connection…
and for your gift of words that resonate so powerfully…

I will carry this with me…
as will H
this generous gift…
of text illuminated with soul and heart and treasured gold

Leah

~

Hello Leah:

I’m glad to hear that I was able to reach out to H and you in a meaningful way. I am a semi-regular reader (and lurker) at 30 Days of Autism, and a while back the post about ladybugs and grief stuck in my mind. I knew I wanted to honor his empathy and emotional intelligence with a poem, since the misconception still abounds that we autistics do not have it. Also, what stood out in particular to me was your description of how H uses symbols to represent people he wishes to remember. I believe that each of us has a unique language and lexicon in how we communicate and transmit ideas to ourselves and the world. I tend to think in pictures and moving film, and have unique associations of songs with people or short phrases with concepts (for example, “computer mind and glass shatter heart” to represent what Asperger’s is like for me). Thirdly, I read the post “Inventiveness and Visual/Spacial Thinking” and was happy to read the descriptions of his inventiveness, and some of that informed my poem as well. I was pretty industrious as a child and am gladdened when I observe that in a child or teenager.

Meaning by the speaker and understanding by the receiver are two different things — but it is always a good thing when the two connect. I’m glad this connection was made. H is fortunate to have you as a parent and advocate. I grew up knowing I was “different” and not knowing why. It wasn’t until age 34 that I received my Asperger diagnosis and I spent a lot of time muddling through things myself before then — and as a child and teenager, I found myself wondering what I was doing “wrong”, why I was being bullied, and wondering how I could understand human behavior and overcome my social ineptness. At 36, it is still a journey of self-discovery and I know it will be this way as long as I live — and I welcome such discovery, as is evident that H does through your postings.

In our journeys, it is my hope and prayer that we and others continue to raise awareness and promote understanding of autism. Best of wishes to you.

-Nicole Nicholson

~

I really must confess – that I tear up each time I read Nicole’s poem and our letters to one another. The support that has been offered to me and to H from amazing autistic adults in the autism community has changed me to my core. My child is embraced and welcomed for who he is in the moment. This lovely exchange between Nicole and myself – is just one example of the incredible sensitivity and care that have been extended toward me and my family.

Thank you so much Nicole… for reaching out… for making the connection… and for your gift of words that resonate so powerfully…

Please also note: Nicole’s beautiful poem and our correspondence are reprinted here with her permission. I encourage you to check out more of her writing and perspectives  on her sites: A Woman with Aspergers and/or Raven’s Wing Poetry.

RavenswingpoetryRelated Posts:
Ladybugs: Autism, Empathy, and Processing Grief
Inventing and visual/spacial thinking: Got Milk??

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in acceptance, Aspergers, Autism, connections, empathy, poem, poetry | Tagged , , , , , , , , , , , , , , , , , , , , | 11 Comments

Strengths, Stretches, and Autism: More Lessons from the Thrift-Shop

H and I are the same in many ways: we don’t really like shopping or malls but we love the thrift shop with its lure of the find and the potential of treasure. Buying H’s clothes there means they are soft, and comfortable, and can be inexpensively replaced if they are ruined in when he’s inventing in the shop, or climbing, or…???

This time – H needed pants. We have a method. He gets to look around for treasure, whilst I load the cart with pants that may (or may not) be a possible match. He and I meet up when I have the load of potential garb ready for trial – and he has usually found some wonderful thing that will be his reward for trying on all the stuff. I know he doesn’t like trying on clothes – so this is the pleasurable thing at the end of the task (and no – new pants are not an intrinsic reward for my 14-year-old). I ask for permission to use the largest changing room – which is also always the one on the end. This helps a bit, one less sensory issue – one less overwhelming thing.

I take a deep breath, reach deep to muster every ounce of patience, and the onslaught begins. I used to buy clothes and bring them home for H to try on – and just return what didn’t fit. We have moved on from that… one small step at a time (big steps all).

It is Wednesday night… the store is almost empty… but open late: ’till 9:oo.

I gently wrangle H into the changing room as he eyes the cart. I out-manoeuvre his query about exactly how many pairs of pants are within – by explaining that I cannot tell because of the way they are piled – but I think it is about 10 minutes worth.

I deftly switch the subject to my wonder anes_tetris-1t his find… a pristine NES Tetris Game circa 1985. It is a long pass to my retro gamer boy, who catches it… figuratively… and can talk of little else for the next few minutes. Effectively distracted, we begin to build momentum for the task ahead.

I ask H to pass me pants as they fit – or don’t – and one at a time, I trade for a new pair, sorting and encouraging as we go. We make a kind of game of predicting whether the pants will be passed under or over the door each time. I am organized. Probably, too, I over-prompt and unintentionally add to the noise and sensory overwhelm. I work to be aware of this and keep the mood as light as possible.

Over – under – over – over – under: pants are flying in and out. Some fit – most don’t – and this entire scenario is difficult for H. Music, lights, small room, expectations, and Aaaack… trying on clothes!! I get it. I find it overwhelming too.

But I am there to support – build skill – lighten the mood – create a game or distract…

H is loud – and funny too, but not every utterance from within H’s stall is polite. His wit and sweetness are mixed with a tone that is cheeky – sometimes rude and disrespectful. He is at capacity – and I knew this is coming. This is why I remembered to breathe – to dig deep for my patience – and I am ready to advocate if needed.

A lady emerges from the booth beside H.

She whispers: “Does he always talk to you like that?” (and I am grateful at least for the whisper)

“No – not at home. But this is difficult and he is overwhelmed by the lights and sounds and expectations. This is all he has left to complete the task right now – he is at capacity with his sensory issues and is doing his best.”

Her stance shifts: “Oh – I am so glad I didn’t say  anything – I have a daughter with CP and sensory issues – I get it.”

I smile, “Yes. You get it then. I appreciate you asking and not judging – this is how we build skill.”

~

H and I make it through the heap of pants.

Three pairs make the cut… along with the coveted NES Tetris game cartridge.

H looks at videos by the checkout. We have an ongoing arrangement: he knows at checkout time he needs to be with me if his treasures are to be purchased.

I take another minute, before we do the line up. H looks at videos by the checkout – and I pretend to look at the items in the locked case. But really I am just calming… reclaiming my poise and releasing my stress… remembering to breathe. I too am at capacity.

On the way home, I share how great he did and list the positives. I also share that a woman asked me if he always talked like that to me.

“I’m sorry mom. I didn’t mean to be rude or disrespectful.”

“I know. I don’t need you to be sorry. You are learning to handle things so well, and it was not easy to try on all those clothes. Right now you are learning to understand and explain what you need. Being able to do this in a way that sounds okay to others will take time – and sometimes you may yet not be able to do so.”

“Oh mom… were you embarrassed?”

“No! Definitely not! I am proud of you! You did great tonight. I did think it was important to tell you what the woman thought. I think it is important to get to a point to be able to talk to others respectfully even when you are upset, so that they will want to hear your message. That is a skill – it’ll come…”

~

And now I am writing this tale and I cannot sleep. It is early Saturday morning – or perhaps very, very late Friday night. I cannot stop thinking about our dialogue and I can’t help but reflect that approximating typical is a difficult path indeed. I worry about the pressure of my expectations… the sirens of typical that sing me to their rocky shores. The strengths of my child – should not inversely become a liability to extending him understanding and support.

I certainly cannot pretend I’ve got this figured out… I am struggling. It scares me that it is so difficult to unwind – to get right. And too, there exists in this the possibility that I may not get it right, which is simply not an option!

The lines are not clearly drawn – it is a tangled thing.

This place where expectation and identity meet…

H cannot yet sing his advocacy – and I have to welcome it – support him in his strengths and stretches. I cannot jump upon the one thing not yet achieved and then be blind to the amazing resiliency and accomplishments of this child.

A year ago I suspect I would have told him I was embarrassed – but now I see this differently. I also would have felt like my explanation to the questioning woman, was making an excuse – rather than advocating for the needs of my child. I have changed. My advocacy is changing. My knowledge and vision for what my child needs, and my ability and willingness to listen to what it is he is saying about what he needs, continues to grow. I no longer want to force his silence for my comfort. If his words aren’t sweet… there is a reason! I am building an understanding that my child does not choose his responses to make it difficult for others. He is doing his best.

I don’t expect I got this one entirely right… but I will continue to try…

Next steps…

Related Posts:
Welcoming Your Dissent: A Poem
Treasures I found at the Thrift Shop: Autism and Understanding

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in aproximating typical, Autism, Autistic Shadow Traits, Goals, limits, Neurotypical, Parent, Resiliency, self-advocacy, SPD | Tagged , , , , , , , , , , | 23 Comments

Building Stilts and Resiliency

H built stilts yesterday.

His dad, Craig the Amazing, has offered to build some wooden ones with him, but apparently H couldn’t wait.stilts1

Here is his prototype…

stilts3

Pretty cool, really…

Then one of them broke – or more like… tore.

stilts8

I love it when H laughed and said, “That was unexpected!”

This is a window into his cognition. A reflection of his developing resiliency and flexible thinking… and too a reflection of the power of the support system we have created for this child. Resiliency and flexibility do not come naturally perhaps… but they are patterns of thinking that can be modeled, supported, and learned.

He then picked up his prototype and examining it queried, “Hmmm… I wonder what went wrong??

H is an inventor…

stilts7

He asked me if I would blog about it.

“Do you want me to?”

“Sure! But Mo-om… do you like my stilts???”

I winked… “You mean ‘stilt’!”

“Aw… Mom!! Ya… maybe you should take a picture of how it broke…”

And we both smirk…

Today he is at it again… problem-solving, sticking to it, persevering, with time and space to pursue his interest and his passion.

stilts2

And he found another way that didn’t quite work… that’s one less thing to wonder about…

stilts6This week it is stilts… I have no idea what it will be next. What I do know is that H’s explorations and inventions honour his strengths, interests, and learning style, and also give him the opportunity to learn about perseverance and resiliency.

Again… and again… and again…

These are the skills we all need to keep us moving ahead…

stilts5

As I put the finishing touches on this post, I hear the the rhythmic squeak, spring and click of the back door screen, the familiar clink and twang of tools in use, and the staccato refrain of sneakers on the basement stairs. Like the stirring of Lego in the bin, this too has become a calming music…

Related posts:
The Wing: Tales from an Aspie Childhood
Inventing and visual/spacial thinking: Got Milk??
Silliness and Invention at the End of a Long Week
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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)


Posted in Autism, Father, Flexible thinking, Resiliency | Tagged , , , , , , , , , , | 9 Comments

Autistic Pride Day 2013

THIS…  1000000000 x this!

AUtisticPride2013.jpg_________________________________________________________

30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in acceptance, ASD, Aspergers, Autism, Autism Positivity, Autistic Pride Day, diversity, inventing, Neurodiversity, self-directed learning | Tagged , , , , , , , | Leave a comment