Advocating: Love not Fear!

SidelightH.jpgH just shared with me:

“In Tales from the Darkside from 1983 – there is one episode where there is a monster in this boy’s room, and he advocates for himself and tells the monster ‘Hey this is my room’ and the monster backs off and the boy gets the power over his room.”

Then going deeper – he replays this part of the episode and explains some of the plot and dynamics as he sees he has caught my interest:

“Mom look – here the part where he advocates for himself. His dad is a real jerk. He thinks he should stop being 6 years old and be a man right now: he [the dad] thinks he has the right to do what he wants.”

Sensitive to my reluctance to watch scary stuff:

“Don’t worry, Mom, it’s not that scary – there is an octopus man under his bed and a buzz saw – but it is just his imagination… Here it comes. You have got to see how he advocates for himself.”

We watch together – and then move on to discuss the deeper aspects about how the boy in the segment advocates for his space and also with his father.

Hdonotlisten.jpgH is getting this stuff. He is understanding what it means to advocate for himself or others and he is developing an ever-stronger sense of his right to take a stand.

As parents we nurture this young man’s sense of self and his heart for social justice with our acceptance and love. Empowering my child in this way – requires a little bit of letting go.

Sometimes… actually… a lot of letting go.

And letting go can be scary… but it is important to understand that fear is mine… 

I have to be willing stop holding the reins tightly and give H room to make decisions. Giving up control. This is love…

Love. Not. Fear.

I am open to other ways of seeing and doing and I work to set aside my reading of tone – so that I hear the intended message.  This is not easy to do and it is sometimes a messy thing, particularly with a teenager… but I am supporting H in finding his voice. Sometimes this means I have to silence mine. This is love…

Love – not – fear!

Over a Thai dinner in Chicago, I told two friends that we had H enrolled in a Social Skills Group. (They almost sprayed their beverages at me…)

I waited a beat – then smirked and confessed: “It’s true he is hanging out and learning to play Magic the Gathering at a local collectables store. He is socializing there and connecting with others in a way that will help him find community.” HAtMagic2.jpg

We laughed… and then more seriously talked about how this represents the authentic honouring of H and his interests in a way that creates opportunity for growth… without stigma.  At times I have felt the pull and pressure to enroll my kid in therapies and interventions, but too often I have seen these done poorly. I have seen my own son (and others) anxious and shamed for not using strategies and skills people assume they should be using. I am working to offer information and strategies and opportunities to H in a way that does not make him feel like he is broken and needs to be fixed. This is love…

Love NOT fear

I want to support my son in building skills to help him navigate his way in a non Autistic world – but I want to balance this with the message that he doesn’t have to ‘pass’ or bury his authentic Autistic self. We are looking for opportunities for H to connect with others around his interests and supporting him in finding his people. This is love…

Love not fear…

I resist over-scheduling my kid… he needs time and space. I get that his interactions may look different from mine – and that this difference does not have some imposed hierarchical measure that implies my way is better. I value his way… This is love…

LOVE not fear…

I resist over-prompting… this shows my trust in his ability to work things out for himself and Craig and I are looking for opportunities to step back. This is not easy… This is love…

love not fear

I have trust in the Autistic community and the wonderful relationships I have developed with so many Autistic people. They generously share their perspectives and they shape my parenting and my actions as a parent and an educator… and as a human being. My appreciation is so deeply felt. This is love…

Love not fear ♥ SupportNeurodiversity.jpg 1507714_648047545241682_977488864_n

This post is part of the Love not Fear Flashblog scheduled for February 14, 2014.  Visit this site to view all of the participating posts. _________________________________________________________ 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 Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in Advocacy, advocate, Autism, flashblog, letting go, Neurodiversity, social justice, Space and Pace | Tagged , , , , , , , | 12 Comments

Stop… and Rail Against Stigma!

RailagainstStigma.jpginmemoryofalex “Stop,” a poem about the damage of negative stigma for Autistic people and those who love and support them, was originally published here, and was written in memory of Alex Spourdalakis… and far too many others…

I am ready for the day when social justice and human rights are extended to every person and this poem becomes an archaic relic from an ableist past…  I believe we will get there!

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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 ~ June 2013

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RailagainstStigma.jpg

We need to rail against stigma… Please find out more about #posAutive Action for Social Justice at BoycottAutismSpeaks.com

 
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 Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in ableism, acceptance, Autism, autism stigma, diversity, Neurodiversity, poem, poetry, reframe tragedy | Tagged , , , , , , , , , , , , , , | 7 Comments

Time Together and Painting The TARDIS

TheTARDISStamp.jpgIt has been a laid back Sunday.

There is a tonne of stuff I probably should have been doing… like cleaning, or dusting, or some other kind of household chore…

We threw that off…

We had a laid back Sunday

H and I painted.

I encouraged him to explore with colour and touch and to experience the paint and canvas in a sensory way.

We painted and talked, and painted and talked some more.

And then, when he was done, H abandoned me to build a TARDIS in Minecraft.

He said he was making it for me… which may be trifle suspect because I don’t actually play Minecraft.

Fingerpainting.jpgI love his painting.

TheTARDIS.jpgInspired by H’s picture and the Vincent van Gogh episode, I painted a Doctor Who themed image as well. You can see the TARDIS and a wee bit of a Dalek hidden in there amongst the swirls.

PAinting.jpg

And now we are watching Doctor Who while dinner is in the oven.

I treasure these times because I am very aware that H is perched on the edge of adulthood and I notice that time seems to be zipping by at close to time-warp speed. I expect and understand that soon he’ll be busy with other stuff and that spending the afternoon hanging out with me may become a rare thing indeed.

Sometimes the pace choses me… but not today.

Today was a day to connect – to hang out – to share in and explore H’s current interests.

So the house isn’t as tidy as it could be… and tomorrow I am back to work, but I can’t imagine I will ever regret spending a laid back afternoon doing Doctor Who related things with this wonderful young man.

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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 Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in Autism, Doctor Who, weekend | Tagged , , , , , | 3 Comments

Rail Against Stigma: This is not a Radical Act!

Sometimes people think I am kinda’ a radical for speaking against negative stigma and organizations like Autism Speaks that perpetuate the stance that Autistic people are a burden and a tragedy.

However, I don’t believe that speaking up for human rights and social justice is a radical act far from that… it is simply the right thing to do.

Yesterday there was news of the third murder of an Autistic person at the hands of their parent/caregiver in the past month.

We have to rail against stigma…

Taking a stand against the rhetoric that is used to justify murder is far from a radical act…

It is collective responsibility…

Screen shot 2014-02-01 at 2.50.03 PM

Let me say that again:

We have to rail against stigma…

Taking a stand against the rhetoric that is used to justify murder is far from a radical act…

It is collective responsibility…

 
Related Posts:
http://raisingrebelsouls.blogspot.ca/2014/01/the-boycottautismspeaks-movement-is_31.html?spref=fb
http://30daysofautism.wordpress.com/2013/11/16/fear-hate-and-exclusion-its-time-to-silence-autism-speaks/
http://emmashopebook.com/2014/01/14/autism-and-human-rights/
http://amazingadventuresautism.blogspot.com.au/2014/02/autistic-people-have-same-rights-as.html
http://www.squidalicious.com/2013/09/on-autism-murder-apologists.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 Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in ableism, acceptance, Autism, Boycott Autism Speaks, Collective Responsibility, Rail Against Stigma, reframe tragedy | Tagged , , , | 5 Comments

Ode to a Book: A Poem by H

On Sunday I helped H complete his poetry project for school. He wrote this fabulous poem and gave permission to share it here.  We did a few cool photos to go with it as well.

Wellspine.jpg

Ode to a Book

Mysteries and adventures trapped inside

A thick body of paper

And leather

Wonders

Waiting for the next reader

To enjoy the magic

Of delight, happiness, sadness and sorrow

Books are filled with imagination

Which the readers shall enjoy

Pages that turn with beauty

And excitement

And curiosity for the next chapter

Story of any kind

You choose

Look through the library

Any shelf

Take your pick

Spine sometimes ripped

Sometimes smooth

It doesn’t matter

Just pick it up

Open it

And enjoy                                 By H, January 19, 2014

BuriedinBooks.jpg

H: “Hey Finnegan, do you want to hear something from my H.G.Wells collection??”

readingtofinn.jpgReading by the digital fireplace on his iPad.  ♥ I love this kid!!

digitalfireplace.jpgAnd… for the final reveal,  here is how we did the cool buried in books photo:

Howwedidit.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 Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in Autism, poem, poetry | Tagged , , , , , , , , | 5 Comments

Fabulous Fringes: A Poem

fabulousfringes.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 Autism.

© Leah Kelley, Thirty Days of Autism (2014)

This post is participating in the T-21 Blog Hop. Here is a bit of information about the intent and focus:

“This month will be about social justice. It will be for calling out, for demanding, for saying “we are *not* going to be silent”. Call it solidarity for the angry. We’ll call it “architects of change”.

Acceptance, fairness, equality: these things are not to be taken lightly. We are not all on the same journey. Some of us have taken different roads; it is at our common intersections that we will now meet.

For three days, add your posts, both old and new. Let’s set the tone for a year of change.”                                            Jen

Click here to enter your link and view this Linky Tools list…

Posted in acceptance, connections, diversity, Flexible thinking, listening, perspective of others, poem, poetry | Tagged , , , | 2 Comments

Who is calmer? A survey by H

This post is by H. We had one of our long drives into the city the other day and had lots of fun discussing various things, some very serious – some silly. H thought it would be great fun to share his ideas and examine the finer points of argument and considerations around the question, ‘Who is calmer?’ He came up with some rather amusing scenarios which he carefully wrote on his iPad.

Please take a second to appreciate his sense of humour and to respond to his survey so he has lots of fabulous data to examine and he can enjoy your perspective as well.

If you have another idea, H invites you to add it in the comments!

Happy New Year!

Leah and H

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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 Autism.

© Leah Kelley, Thirty Days of Autism (2013/14)

Posted in Autism, calm, Humour, perspective of others, self-directed learning | Tagged , , , , , , , , , | 4 Comments

Doctor Who and St. Nick: What my child needed for Christmas

christmasmouse.jpgH woke up early this morning…“It is Christmas, Mom! C’mon… get up!”

Then quoting Mr. Scrooge he added, “I don’t know what to do! I’m as light as a feather, I’m as happy as an angel, I’m as merry as a school-boy…”

H loves Christmas and even at 15 he desperately wants to believe in Santa. As far as I am concerned – if it gives him joy – go for it buddy! I did meddle with this years ago – when H was in grade three… but I learned my lesson. (There is a link to that story at the end of this post.)

On Christmas Eve, H left out milk and some brownies that he made for Santa and a few carrots for his reindeer. Christmas morning, as is our tradition, he was met with a note of thanks and encouragement from the Jolly Old Soul. H read the note aloud to us:

Dear H,

Thank you, as always, for the thoughtful snacks. You have the true spirit of Christmas in your heart. I see this in so many of the things you do: the money you have raised with your wand project is a perfect example.

You are a craftsman, like me, and an inventor. You are creative and smart and curious, and best of all, you have a fine spirit and a warm heart.

I am proud of the work you are doing to speak to others about what it is like to be Autistic. You are helping to build understanding in the world.

I am pleased that you are learning about self-advocacy, and you are co-presenting with your Mom, and teaching others about what it is like for those who think and experience the world differently. I understand that, my friend. I sometimes find crowds too much, and I like to have time by myself to work in my shop. I guess that is why I like to deliver all of my creations when everyone is sleeping. Ho! Ho! Ho!

Please keep exploring your interests and develop your skills in these areas, and know that these are important. Also please keep doing the work you are doing to teach others about the beauty of diversity. The world needs more understanding, and you are becoming a real leader, H, who is making the world a better place.

I am proud of you, young man!

Love,

St. Nick

ReadingSantasnote.jpgAnd there was a perfectly awesome gift…

SonicScrewdriver.jpgH was thrilled with his sonic screwdriver and proclaimed, “I am the next Doctor… I am the last Time Lord, but my regeneration made me a 15-year-old child…”

Ah…. I love this kid!!

❄ Merry Christmas from our house to yours ❄

Related posts:
The grounding and magic of tradition: Meddlers be advised
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 Autism.

© Leah Kelley, Thirty Days of Autism (2013)

Posted in Autism, diversity, Doctor Who, family, self-advocacy, St. Nick | Tagged , , , , , , , , , , | 2 Comments

The Great Chicago TASH Adventure

I am sitting now in the airport, awaiting my flight home to Vancouver via Portland.

It is a welcomed quiet; an empty space to pull together my thinking and reflect upon the many ways I have been nudged and influenced this week. I have a few hours before I hit the busyness of home and work to consider the impact of my experience.

I was in Chicago for almost a week – presenting at and attending the National TASH Conference. I have had amazing conversations about ableism, inclusion, communication, dissent, advocacy, self-determination, access, neurodiversity, activism, and the disabilities rights movement and more…

I met, hung out, and conversed with people whom I greatly admire: Ibby Anderson Grace (of Tiny Grace Notes (AKA Ask an Autistic) and one of the Chicago based organizers of the TASH Conference), Ariane Zurcher (of Emma’s Hope Book), fabulous Autistic activists like Zach Richter and Emily Titon (contributor at Disability Right Now: About us, not without us), and long-time disabilities rights activist, Corbett O’Toole.

These conversations have impacted me and I now must consider things from different angles; I can see new ways to shift my language, and to continue to take action over issues of social justice! It will be hard to leave behind the camaraderie of being with this community – and the Micro TASH events that grew out of our grassroots connections… but I am grateful for theses people and my passion is kindled anew!

I want to tell the full story of this experience – let it all drip out of my fingers to be captured on my computer – but there is too much to recount – and I don’t want to become immobilized by the impossibility of this task.

I took more taxi rides in this short time that I have probably taken in the last 15 years. I was besotted with Ariane and Ibby for reasons – too many to count – but feel I must share my admiration for their bravery in stepping into the street to hail a cab. Much to their amusement, I watched and snapped photos tourist-style from the safety of the curb.

hailingacab.jpgI was present for Peyton Goddard’s opening address. Here are my visual notes:

PeytonGoddardnotes1.jpgAnd, for those who might be interested, here is a link to Peyton’s site which has the recording of her speech: http://www.peytongoddard.com/2013tashKeynote.html

And… I have doodled a bit more on the long trip home… once again taking in the quotes from Peyton’s address that are embedded in the image. I was also thinking about Zach’s words to me that doodling is a creative and generative stim. I love that!

PeytonGoddoardBW.jpgI attended a presentation by Tracy Thresher, Larry Bissonette and Sue Ruben and was finally – finally -  able to purchase a copy of the film Wretches and Jabberers.

Ibby, Ariane, and I presented in a panel discussion: Autistics, Friends, Family and Educators: An Interactive Panel on Relationships and Multimedia.

Here is a cool view from behind the presentation table as people were still filing in:

behindthepresentorstable.jpgAnd too… there was the hanging out and socializing and late night conversations… and new connections with people I hadn’t expected to meet. I will likely have more to write… but just a little later… Consider this to be Part One!

This post is part of the T-21 blog hop. Please click on the linked image below to visit other participating blogs:

______________________________________________________________ 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 Autism.

©Leah Kelley, Thirty Days of Autism (2013)

Posted in ableism, Activist, Autism, diversity, Neurodiversity, perspective of others, Social Hangover, Visual Notes | Tagged , , , , , , , , , , , , | Leave a comment

Wright vs Right: Autism $peaks is Completely Wrong

AS vs Reality 5Please stand with the autistic community and those who love and support them…

Please visit the change.org Petition to the Corporate Sponsors of Autism Speaks.

Please sign and share widely, along with the other the links at the bottom of this post.

Please feel free to share and use the images in this post to support this project, and note I have included a template for the comparison images to help others understand why we are standing against Autism Speaks.

Please, if you haven’t yet, take the time to read this letter written by co-founder of Autism Speaks, Suzanne Wright, Autism Speaks to Washington – A Call for Action. (Trigger warning – I’d suggest you consider of reading this hateful link when young children/teens are away from the screen)

Screen shot 2013-12-04 at 11.11.04 AM Wright is Wrong Screen shot 2013-12-04 at 11.35.02 PM Screen shot 2013-12-04 at 12.34.17 AMScreen shot 2013-12-04 at 10.59.13 AM* Find out more about Boycott Autism Speaks: http://boycottautismspeaks.com/home.html

* Sign the petition: http://www.change.org/petitions/corporate-partners-supporters-of-autism-speaks-terminate-your-financial-support-of-autism-speaks

* The Autism Women’s Network (Amy Sequenzia):  http://autismwomensnetwork.org/article/corporate-supporters-autism-speaks

*ASAN (Autistic Self Advocacy Network): http://autisticadvocacy.org/2013/11/2013-joint-letter-to-the-sponsors-of-autism-speaks/

*Paula C Durbin-Westby: http://paulacdurbinwestbyautisticblog.blogspot.ca/2013/12/boycott-autism-speaks-sponsors-and.html

*Emma’s Hope Book: Ariane Zurcher http://emmashopebook.com/2013/12/06/autism-speaks-and-signal-boosting/

And on a final note, my daughter Nika recently asked me: “Mom, which Autism Organizations should I support?” Here is the list for those of you who might be wondering the same… Let’s encourage the corporate sponsors of AS to shift their funding to  one of these:

______________________________________________________________ 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 Autism.

©Leah Kelley, Thirty Days of Autism (2013)

Posted in ableism, acceptance, advocate, Ari Ne'eman, Autism, autism stigma, Boycott Autism Speaks, diversity, Money Speaks, reframe tragedy, self-advocacy | Tagged , , , , , | 7 Comments