Forward and back…16 years of Ausome!

This fabulous young man turned 16 today…

H16.jpg

It was a day of looking back and looking forward… a low-key, laid-back day with very few demands. In reality, today was a sort of culmination of small birthday events that have been occurring for about a week; a spreading out of fun and peopleing that works delightfully well for our family.

And to be honest, I am soaking in that slower pace this weekend – getting ready to take a run at the hill as H and I are heading to TASH’14 in Washington, DC, in a too rapidly shrinking amount of time. I am holding some resources in careful reserve; both excited like a little kid waiting for a party to begin, and as usual, a bit panicked about how we will ever be able to do all the things we need to do to be ready to go.

I trust that it will come together…

H20Months.jpgAnd in an amongst all of this, I am reflecting that this beautiful little boy, pictured here at 20-months-old, is now a fabulous young man of 16.

He takes my breath away.

And… I can hardly believe that in less than 2 weeks H and I will be co presenting at TASH with the wonderful Elizabeth (Ibby) Grace of Tiny Grace Notes.

Our session is titled: Social Model of Disability: Reframing Disability In Teacher Education Programs and Classrooms. You can read about it here, but the gist of it is we will share the value and importance of reframing disability as part of the natural diversity of human experience, and examine how this can inform our practice and support of those who experience the word differently.

Attending and participating in a conference like TASH is going to give H the opportunity to meet so many activists in Autism and Disabilities communities, and also quite a number of other Autistic youth. The timing for this for H could not be better, and though I know that I should not just be expecting him to follow in my footsteps, nor should I be pushing him, I cannot squelch that kinda-hoping-feeling that the spark I see in him will be kindled into something larger.

I have great hope for this next generation’s ability to carry on the work that so many Autistic activists are doing to make things better, and to continue to rail against stigma, and fight for social justice and human rights for those who are less privileged.

I am endlessly influenced by my Autistic and Disabilities Activist and Advocate friends…
and then I influence H…
and too…
he influences me…

So, ya… tonight we kicked back and watched the 80’s flick, Fright Night, which was actually surprisingly good. I should probably be embarrassed at the way my child is influencing my tastes, but I am wearing my growing appreciation of horror and all-things-Zombie with a certain pride. To me this is an measure of time spent together and of a willingness to learn about his interests.

Forward and back… yes…

It was just past 10:20 when H went to bed tonight, as that was the time he was born and he felt it wasn’t truly his birthday until that moment. As the time came, he hugged me confidently affirmed, “Now I am 16. I love being me!”

And my heart soars…

____________________________________________________________

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, Advocacy, Autism, Autistic, B films, Parent, privilege, Rail Against Stigma, Space and Pace, TASH | Tagged , , , , , , , , | 5 Comments

Leaning into my Hypocrisy

Leaninginwatermarked.jpgSometimes the things I know to be right and true, the things I aspire to, do not come easily to me in the tired-out end-of-the-day moments.

Those are the times when I may not be at my best: my patience may be worn thin, and I may feel the tempting lure of what seems like a shortcut… one that ends up just making things more complex and unruly.

Tonight was one of those nights.

I was rushing H to get to bed – and he was yelling at me for rushing him. It did not go particularly well…

But H called me on it:

I am trying to advocate for myself here. I need you to listen to me.

I am having a hard time listening because you are yelling at me and I don’t like to be yelled at.

Well, I feel I have to yell because you are not listening to my message!

Okay… let’s connect – I am listening…

You are teaching me to advocate – I want you to listen to me and hear what I am trying to tell you.

You are right. I am listening.

I don’t like it when you rush me. I feel pushed.

You are right. You don’t like to be pushed. I don’t either.

You were not listening to my feelings.

Yes, H, you are right about that too. I was listening to your tone and feeling upset that you were talking to me in an angry way.

Did I sound angry?  I didn’t mean to.

I know… and I didn’t mean to not listen. We are both learning here and I think we are getting better at this. We might make some mistakes – and that is okay… You did a great job of telling me how you are feeling. I will try to do a better job of listening.

I know there are other layers here… layers that I am only beginning to see and understand. There are depths to ableism that I do not fully see – because no matter how determined I may be to fully understand – I approach from a point of privilege.

I am developing a deeper awareness of this as well.

I get this… and yet I know I don’t… not fully.

To claim that I do would be insulting: it is not my experience – I cannot fully understand.

It has me moving more cautiously… and checking my words carefully.

Big picture… H and I concluded the exchange with both of us feeling heard and respected and understood.

I appreciate H for being patient with me… for pointing out my hypocrisy… and for second chances!

BeFunky_Ralph Waldo Emerson.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 ableism, acceptance, Advocacy, advocate, Autism, self-advocacy | Tagged , , , , , , , , , | 3 Comments

Roughing it in The Beast!

Last summer, when we were getting the insurance for our wacky old motor home, we had a chance to see this beast through H’s eyes.

He announced, “A motor home is way cooler than a fannypack…”

So ya, a motor home is cool in ways that are almost too great to define, and thus we shall rely on H’s fannypack coolness scale. This needs to be a thing! OMG!

And then, later, when I explained that we were going to move our camping stuff from the basement and keep it in The Falcon, the realization for him was delightful to witness, “You mean we can go camping without even PLANNING!? Oh ya!!”

Here is a shotH-CBRadio.jpg of H working to figure out the CB Radio. He quickly picked his CB name – and he was clear in pointing out that we are now not only in possession of a vehicle clearly as cool as the motor home in The Walking Dead, but also, in case of an actual Zombie Apocalypse, we are in good stead.

H stated, “When all other communication fails, because of loss of power and satellite communication, we will be in good shape and grateful for the low-tech CB radio.”

Seriously, H spend the first two days that The Beast was in the driveway, marking his territory and staking out his ownership and listening to music in the driver’s seat. I think he is in love!!! (And I’ll have to admit that I am a little bit in love as well.)

Like I already said – it isn’t pretty – and there are clearly things – potentially leaky things – that need repairs.StairFix.jpg.. on an ongoing basis.

Craig did a little surgery on the bottom stair that had rotted away… and I made a few curtains and collected a bit of melamine and other cool kitschy stuff to round-out our rather rustic camping supplies.

And though we were certainly not done with the repairs, off we went for a trial run. In British Columbia we are lucky; we have plenty of beautiful places to hang out and hike and camp.

We headed off forRelaxed.jpg one night, on the day after I completed my summer work with the university. I hadn’t really felt like summer had begun – but 20 minutes after parking I was sitting back and relaxed.

Ahhhhhhh…

Ya… pretty luxurious compared to tenting. 

Our goal has been that we will be able to head off for a night – or the weekend – with little or no packing.

I love camping – but I hate the stress of packing and unpacking. I just don’t seem to have to spoons for it – so often the result has been that I would rather stay home. Newcurtains.jpg

It has taken us (well, mostly Craig and H) a bit of time (like over a year) but this November weekend we went for a glorious overnight with no real planning… and it felt just like running away. Craig and H had novembercamping2.jpgeverything organized, so I popped home after work, threw some clothes in a bag, and we were off.

It was spectacular…

H and I sang “Moon Shadow” together by the campfire and made banana boats…

Novembercamping1.jpg

 

We had time to connect as a family…

I had time to wander about alone with my camera and my thoughts…

And I feel renewed…

Thank you Craig and H…
I love and appreciate you!

And both of you are way cooler than a fannypack!!

____________________________________________________________

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, Autistic, Sometimes the pace chooses me..., Space and Pace, The Beast | Tagged , , , , , , , | Leave a comment

Considering 50: Trajectory of Development, Independence, and Accidental Unfoldings

Often birthdays are a quiet affair at our house, which is just fine with me, but this October marked my 50th and we ushered it in with a wildly fun Elton John themed party.

Leahfifty3.jpgSeriously, for people who are pretty much homebodies, we threw quite the celebratory shindig. My amazing friend G♥ created one her fabulous dance playlists of 50 songs, which had us on the go till all hours. We finished the list at 4:30 in the morning… and yes… my leg muscles were hating me for the next few days, but it was entirely worth it.

A few weeks later, we are still finding bits of glitter, stray feathers from the flashy abundance of boas, and the odd pair of party shades stashed in spots we are shocked we hadn’t noticed.

So ya… 50…

I figure this perhaps marks the half-way point of my life (which may be revealing of my cocky attitude)… but really, in many ways – I feel like I am just getting started.

There is a part of me that feels like I should be looking back – taking account – and settling in to something more… I don’t know… settled???

But I find myself instead looking forward… and wondering about new possibilities and feeling really excited…

I don’t know where I am going exactly – and I don’t need to – I just have a kind of general feeling and trust that whatever it is that unfolds and that I make happen (I have no doubt that these are combined: luck, unfolding motions of the universe, mixed with my choices and actions) will be well situated in and honouring of the things I value.

I feel stronger and more sure of myself than I did when I was younger, more trusting of my busy, messy brain, and my learning style and my ability to separate out the entwined threads of my thinking and then communicate these with others.

My understandings are deeper, I can shift in and out of the meta and the minutia, and I am more productively sensitive and aware of that space between myself and others. I am fascinated by that space between – and the connections with others – that place where we interface and where a word, or a look, or perceived tone can shift and change things and open up possibilities.

And too, as my world has expanded with my wonderful connections within disabilities communities, and as I have developed close friendships with Autistic people, I have become more aware of what I am seeing as my responsibility as a person with privilege.  I am committed to continue to work with other activists to affect change and to move the world (or at least one small part of it where I might have some tiny dominion) in a positive direction.

When I consider how I feel about my future – I cannot help but also reflect on H and that I am increasingly comfortable with understanding that I do not have the ability to see his future.

Of course I project about the ways his future might be shaped by actions and decisions  (his, mine and Craig’s, and other circumstances), but I also feel that I am welcoming his transition to adulthood with an increasing trust in how things will unfold, and in his capacity to learn, and to make self-determining decisions.

During a presentation last week, I was asked about what I see for H’s future. I responded that I don’t really know, that I have learned that I cannot know, and that my role is to support him in authentically being himself, to find his way, his path, to be fulfilled, and to ensure there are opportunities for him.

The truth is… I can’t know H’s future any more than I can know my non Autistic daughter’s future, or my own, or any more than anyone truly can know the future of another.  I made the point that what I am learning is that it is really important for me to be okay with not knowing how everything is going to unfold, and though it may not be easy, I trust this process.

Periodically, I am also asked by someone, a friend or colleague, about what I imagine for H in the future, including whether I think he will ever live independently

This question about independence happened recently, and for a second I felt a bit put off or defensive about this query, but that’s when I took a breath and settled deeper into my thinking… to let that moment pass.

My response, after the breathing beat, was something like this: “Independence… ya… I am not sure I know what that even means. It is a good question to consider – but really – I am wondering if any of us actually live independently… because… I know I don’t.”

I just love this particular friend, and the way we went on to discuss ideas around independence as well as the role of a parent supporting this process of transitioning to adulthood.

And too… this had me thinking further and considering that this drive for independence is perhaps situated as an unachievable standard that we hold up as some kind of measure of success for people with disabilities, but that we don’t do this to non-disabled people.

We don’t do this… because it isn’t real…

I mean that independence… it isn’t a thing… it isn’t a destination in itself.

Consider for a moment that we don’t generally ask someone with a son or daughter who is 24 and still living at home, with that kindly gentle tone laced perhaps with subtle underlying pity, “Do you think ____ will ever live independently…?”

So ya, for H, the word independence does not capture some destination as he makes his way to adulthood. The goal is that he has the resources and capacity to be emotionally healthy, self-determining, able to problem solve, connected to community, and interdependent with others whom he cares about and who care about him, and hopefully that he can spend time doing things that he is passionate about, and that give him a good quality of life and a feeling of fulfillment.

So – now – when I think upon myself – and how long it has taken me to get to this place, and how I am still learning and growing and even now contemplating things that years ago may have seemed entirely beyond the realm of possibility…

I will gift my son the same time and faith that I gift myself…300px-Pluma-azul

I will believe in my son as I believe in myself…

I will trust in the unfolding of possibilities…

Related Post: http://30daysofautism.wordpress.com/2013/08300px-Pluma-azul/16/problem-solver-and-redefining-independence/
_____________________________________________________________

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, accident, Activist, Autism, Goals, letting go, Space and Pace | Tagged , , , , , , , , , , , , , , | 9 Comments

Sharknado 2: A Review by H

sharknado2headernewLast night me and my mom watched Sharknado 2: The Second One, and we were really impressed with it.

I loved the beginning how it was a take off of the 6o’s Twilight Zone, Nightmare at 20,000 Feet, and how there were sharks on the wing on the plane.

That was just hilarious!

I think the opening of the film with the plane for a second looked like a flying shark. I also think this scene would make a cool theme park ride or a simulator game.

That was the best opening ever, and I think I saw Robbie Rist in the opening credits… but my mom and I think we shouldn’t spoil the Where’s Waldo search for everyone else if it is him!

The effects improved as well. The sharks looked a lot more like sharks – like realistic – almost…

I like how Fin was wearing a shark tooth around his neck and how he used a broadsword to chop sharks in half.

And OMG – the CHAINSAW! It was a masterpiece. That chainsaw was brutally stupendous in size. I also noticed the chainsaw didn’t get bloody at all, which my mom and I thought was hilarious.

And just the idea of having Fin lifting that thing with one arm was mind-boggling.

And Finn’s wife, April, went all “Evil Dead” on her arm – but not with a chainsaw – but a circular saw, which was very unexpected and awesome.

Some of my favourite lines were:

“If anyone is gonna play me in the movie – it’s gonna be me.” (Fin)

“I hate the subway” (Fin –  which was like “I hate the 405″ in the first movie)

“I know you’re upset” (the cop after the harsh plane landing)

“This is a twister with teeth… Enough said” (News announcer – “enough said’ was the slogan in the first movie)

I like how Sharknado 2 takes after awesome bad 80s B films like Chopping Mall, with good bad acting.

Sometimes sequels are horrible, like Gremlins 2, and Troll 2, and sometimes the second film, like Teminator 2, is better than the first one. I think Sharknado 2: The Second One was well made and is just as good as the first film.

I send a lot of credit to Anthony Ferrante and The Asylum, and I give it another 4/5 disembodied shark heads on my shark head rating scale.

Decapitated shark head rating scale

People who like movies like Chopping Mall or Return of the Living Dead or the first Sharknado… this is for you! Here is a link to the trailer for Sharknado 2.

*Please Note: H and I feel it is important to share that H authored the words of this review and it was scribed for him by me.  There are many people who find that writing is an opportunity for expression, and conversely some people, like H, who at times find it a barrier. It is helpful if we understand that one experience is not preferable to the other, but rather focus on effectively matching supports and accommodations for individuals with a variety of strengths and experiences. This is honouring diversity ♥

_________________________________________________________ 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, Autistic, B films, Humour, New York, Sharknado | Tagged , , , , , , , , , , , , , , , | 6 Comments

Sharknado in the Mailbox! Dear Anthony

Sharktooth.jpgDear Anthony C. Ferrante and The Asylum,

I got your package and your letter in the mail today. I opened it with a shark’s tooth because it is the only way. I was expecting just Sharknado posters but I found all of these other awesome things that you sent me. I felt just so happy that you’d send such cool Sharknado memorabilia. All this time I didn’t know there were cups and mugs and Sharknado collectibles and now I am just shocked. It is unbelievable. I love them.

Thank you for the blueray DVD. I will be having the posters framed for my wall. I noticed the little hats you drew on the sharks and that made me laugh in a good way. I just loved it.

The Sharknado machine is so cool. It just blew my mind. I thought it was a blender at first, but when I pulled it out, it had these cute little sharks. I will have my very own little sharknado. I will have a lot of fun with this.Sharknado1.jpg

I can’t wait to show my friend Gord at his card shop. I am going to package everything back into the box so I can show him, except I will wear the t-shirt.

I love Sharknado! I am looking forward to the sequel.

I really appreciate all the amazing things you and The Asylum sent me.

Thank you so much,

H

PS.
My mom and I have been watching Z Nation, which I noticed is also made by The Asylum, and I thought is was awesome and really funny that they had a Zombienado.

_______________________________________________________

A little background for the reader:
Last summer, H and I went to see Sharknado and H was thrilled by this film. The following day he created his own severed leg prop and did some digital magic to fly a few sharks into the photo (I need to get him to teach me how to do that), and you can read about it and see H’s awesome prop here.

Recently the planets kind of aligned and I had the opportunity to connect with Robbie Rist (who plays the school bus driver in the first film – and also voices Michelangelo in The Teenage Mutant Ninja Turtles live action movie). I thought H was going to flip right out of his socks – he was so excited!

Anyway, Robbie Rist saw the post from last year and shared it with Anthony Ferrante, the Director of Sharknado and Sharknaro 2: The Second One. And well… it kind of just unfolded that Mr. Ferrante was moved by H’s enthusiasm and he very kindly offered to send H two signed Sharknado posters. As you can see from H’s letter – there was much more that arrived than that.

Here are a few more photos that tell the tale:

Sharknado3.jpgSharknado6.jpgsharknado4.jpgsharknado5.jpgSharknado2.jpgThank you to Anthony Ferrante and The Asylum, and to Robbie Rist and Ryan Budds, who also acted in the first Sharknado for reaching out with such kindness and generosity.

This young man was over the moon…

_________________________________________________________ 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 Anthony B. Ferrante, Autism, B films, Horror B films, making movies, New York, Sharknado, The Asylum | Tagged , , , , , , , , , , , , , | 2 Comments

Chalk it up to Activism! #BoycottAutismSpeaks

Iamnotapuzzle.jpgSo, some people may wonder why I do this activism stuff with my son… and some might even think that it would be better to shield him from what Autism Speaks says about Autistic people.

If I thought for a moment that it was just Autism Speaks that conveyed the negative messages about what it means to be Autistic or the family member of an Autistic person, I might be inclined to entertain that. I might be tempted to consider, for just a moment, that my son might be better off if I gave no attention to Autism Speaks and instead steered him carefully away to avoid the damage.

The thing is, however, that the reach of Autism Speaks, and organizations like them (for instance Down Under’s equivalent, ‘Autism Awareness Australia) have had an impact well beyond the edges of their supporters and their supporters’ friends. The sad reality is that I am raising my son in a society that too frequently views disability through the lens of tragedy, burden, and hardship, and too often frames his way of processing and interacting with the world as something that is beyond acceptance until it is cured, fixed (‘fixed‘ meaning that he can appear to emulate those who are non Autistic) or otherwise eradicated.

These stigmatizing attitudes about disability that are steeped in the language of pathology and cost and deficit are pervasive and we, as a society, have become so accustomed to this stance that many of us cannot even see how problematic it is. The prevalence of stigma is so vast and dominates the discourse to such a degree that it may not even be seen, or questioned.

Sadly… we may be so used to it that we do not notice it until we see its impact on ourselves or the people we love.

Part of raising this young man to be a healthy Autistic adult is giving him the tools and the perspectives to understand about his civil and human rights. I want him to know he can rail against stigma, and I hope that I am modelling that we can work from within communities of support to change things for the better by speaking out and taking action.

You see – this is a kid who has grown up in the era of Autism Speaks. It breaks my heart to say so, but Autism Speaks is the most recognized (albeit – wrongly so) organization to spread [mis]information about Autism.

My son, along with other Autistic people, is excluded by this giant machine of a corporation.

But what he has not been excluded from is the stigma spread by Autism Speaks. He has been surrounded by it since 2005… which is by far the majority of his life.

And the really, really sad thing is… that I know my son already has internalized the negative and stigmatizing ableist messages, language and attitudes that seem to be everywhere. It is insidious and I know this has affected him.

So there is work to be done… and I am hoping – no, counting on it – that this is enough to mitigate hate.

Sometimes it is complex and involves networking with others to counter Autism Speaks and show that there are alternatives.

Sometimes it involves signal boosting the voices of Autistic people, because theirs are the voices we should be listening to – first and foremost.

Sometimes it is carefully choosing my words when my son asks a question – or perhaps monitoring my responses so that I am fully supporting him as our relationship changes.

Sometimes it is understanding that fully supporting him means stepping back and getting out of the way.

And sometimes it is as simple as drawing images with chalk alongside H in our driveway, because this is something that sends a message as well…

 Notatragedy.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 part of the T-21 Down Wit Dat Blog Hop: Click here to enter your link and view the other participants.

Posted in ableism, acceptance, Activist, Autism, autism stigma, Autistic, Boycott Autism Speaks | Tagged , , , , , , , | 2 Comments

Talking with crows: A Sensory Break

Since H was very young I have made a bit of a habit of handing him my camera on long drives, or when he needs a break or is feeling overwhelmed… or when he points out something of interest.

This is also a really lovely way for H to handle crowds or noise – as it gives him some control, something to focus upon, and creates a little space between him and his environment with the camera as a kind of shield, or a mask, or a safe way to narrow his wide view of the world and focus in on something exquisite.

Yesterday at the ASAN Protest of Autism Speaks, H called me over to a little treed area and pointed out a crow that had caught his interest.

He was watching closely, entranced, noting and sharing how it made this clickitying noise…

I handed him my camera…

I love the way H can capture things: details and angles that I might not consider.
I love the glimpse into the way he sees things.
I love looking at the photos together later. It is like opening a gift!

H and I both agreed that these beautiful photos deserved a post of their own… so we are gifting them to you as well! ♥

"Talking with Crows"  by H: Photo 1 of 8

“Talking with Crows” by H: Photo 1 of 8

Talkingwithcrows3.jpg

“Talking with Crows” by H: Photo 2 of 8

Talkingwithcrows4.jpg

“Talking with Crows” by H: Photo 3 of 8

Talkingwithcrows5.jpg

“Talking with Crows” by H: Photo 4 of 8

Talkingwithcrows6.jpg

“Talking with Crows” by H: Photo 5 of 8

Talkingwithcrows7.jpg

“Talking with Crows” by H: Photo 6 of 8

Talkingwithcrows8.jpg

“Talking with Crows” by H: Photo 7 of 8

talkingwithcrows1.jpg

“Talking with Crows” by H: Photo 8 of 8


_________________________________________________________
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 ASAN, Autism, Autistic, Communicate, perspective of others, Space and Pace, support | Tagged , , , , , , , , , , , | 7 Comments

ASAN Vancouver: Protesting Autism Speaks #boycottAutismSpeaks

ASProtest1.jpg

ASAN Vancouver: Protesting Autism Speaks Walk. H is holding a sign that reads “Autistic Rights are Human Rights #lovenotfear”

Last week H and I made our way into the big city to attend an ASAN meeting with the newly founded ASAN Vancouver Chapter. (ASAN = Autistic Self Advocacy Network)

H was pretty quiet during the meeting, and was creating things on his iPad, but he was definitely listening.

He was at the table… and my intent is to support him in gaining a sense of community and a way to be involved in activism and disabilities rights should he so choose.

I cannot say if he will wish to continue with this as he transitions to adulthood – though he is my son and has a heart for social justice – so I suspect he might.

The point is though – that I see it as my role and responsibility to support him in connecting to other Autistic people as well as people within broader disabilities communities. I want him to know that his voice matters – that he has a place at the table – and he can sit – or not – but the possibility will be there for him.

His activism right now is about empowerment and pride – and supporting him in this is a way of mitigating the negative stigma of organizations such as Autism Speaks.

So… today we once again headed into the big city, this time to participate in ASAN Vancouver’s protest of the Autism Speaks Walk.

On the drive in we discussed many things, as is always the case on our drives. Today, among other things, we talked of stigma, and eugenics, and how sad it is for families to hear the message that their Autistic child is a tragedy… and be sucked into believing it…

H gets this stuff… and I can tell you that I feel pride in his indignance!
And he is proud to be playing a role in combating the negative messages!

So the protest was small, but it was almost entirely well received. Our rough estimate was that there were about 50 conversations today that were game changers, and an enormous amount of ASAN and #BoycottAutismSpeaks flyers were shared with people as well.

ASProtest2.jpg

Sarah, H, and Amethyst at the ASAN Vancouver A$ Protest.

H said: “If they knew what Autism Speaks is doing – they wouldn’t be walking – but protesting with us!”

I concur!

And maybe as a result of today’s efforts, some of those walkers will be along side us next year…

Because this is how change happens… and H and I agree that today was made of win!!

H, wearing his #BoycottAutismSpeaks shirt, is standing in front of an old building. He is looking at the Margaret Mead quote that has been painted on the side. Text reads: "Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it is the only thing that ever has."

H, wearing his #BoycottAutismSpeaks shirt, is standing in front of an old building. He is looking at the Margaret Mead quote that has been painted on the side. Text reads: “Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it is the only thing that ever has.”

_________________________________________________________ 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, Activist, Advocacy, advocate, ASAN, Autism, autism stigma, Autistic, Boycott Autism Speaks, Margaret Mead, social justice | Tagged , , , , , , , , , | 3 Comments

Voting “yes” – because I trust you… #bced

Yup… Voting ‘yes’ and that vote is not saying that I think this is a good deal… because it is not…

But it is better than I think we would get if we were legislated back… and I trust, respect and appreciate the work of our BCTF Negotiation Team.

Whether or not the deal is a go (and I hope it is) there remains some troubling deficits in the values of this government. These have resulted in giant corresponding gaps in the health, education, and social services support systems in our province, because the corporate model does not support the kind of society that cares for ALL of its citizens.

I have no doubt that it is the massive networking of groups, like BC Voters Supporting Public Education on Facebook, that are playing an important role in informing people of the issues and building understanding. When I talk to my neighbour, a man at the grocery store, the woman who cuts my son’s hair, or someone on the street, I am impressed with their knowledge of the issues and the level of their support. They are listening and they see things differently now. The issues are finally being talked about, largely because of social media, in a way that allows people to see through this liberal government’s spin and lies…

I am endlessly grateful for that… and I hope this continues to grow… in fact – I am counting on it!

A ‘yes’ vote doesn’t mean capitulation.

We held the line and we took this hill!

This is not a surrender!

Rather, it is an acknowledgment that this is the best teachers can do right now, but we still have work to do to support and fight for a fair and equitable public education, and our children’s rights to access this.

And teachers need your help!

There are actions that can be undertaken by parents, and community members, and School Boards who are willing to advocate along side teachers. Here are just a few of the possibilities that community members are already discussing and taking action upon…

• Elect School Board Trustees who care and are willing to speak up and advocate for public education (as is their mandate)
• Work to shift/end intervenor status of BC Coalition of Businesses in October’s B.C. Court of Appeal review.
• Work on Recall Process for BC Liberal MLAs who are not effectively representing, listening, or even talking to the citizens in their constituencies
• keep sharing info about Class Size and Composition (CS+C) and build informed networks of support to fight for social justice (issues in education intersect with many things – disability/poverty/etc)
• Support parents in grassroots actions such as possibly boycotting of FSA tests

I LOVE this last idea, put forth by a parent who suggested that families refuse to have their children participate in the FSA testing,  the one that is used by the Fraser Institute to rank schools.

Parents have that right to opt out… but many do not know this…

Imagine the time gained for students and actual teaching if enough families said NO to this particular standardized test: it would add at least a week to the instructional time in our schools.

Wouldn’t it be a powerful push back against this government’s corporate/political goals for BCED…

And then consider the potential chain reaction…

Maybe the Fraser Institute would be unable to RANK schools based on these shoddy standardized tests (with their questionable and statistically unreliable results) because nobody came to their elitist party!!

Now that is SOCIAL JUSTICE and collective responsibility in action!!

And as a part of our collective action we need to make sure we don’t turn off the heat on Social Media. We have growing networks of people who understand the issues and want to support and protect public education.

We must keep holding the BC Liberals accountable – feet to the fire (so to speak)… and we must not let them rest for a moment, with their false claims that they have calmed the seas and made things better for kids.

That hasn’t happened yet… but collectively, as citizens of BC, I think we can do this…

So I am voting ‘yes’… because, even though I don’t think the offer by the government gives us what we hoped,  I don’t think teachers are alone in this battle anymore…

And I trust the citizens of BC to have my back and to be there for the future of public education and the children of British Columbia!

Chalkessay1.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, BC Teachers Federation, BCTF, Christy Clark, Collective Responsibility, family, Parent, Public Education, social justice | Tagged , , , , , , , , , | 4 Comments

Dear Mr. Fassbender: Class Size, Composition, and Shame…

Dear Mr. Fassbender,

Yesterday I was invited to speak at a rally outside of your MLA office. I was quite excited to have to opportunity to speak with you, the Minister of Education, in person and thought long and hard about what I was to say.  However, I understand that you were not present in your office, which is sad really, because there were certainly many of your constituents that seemed eager to have your attention and your ear.  In hopes that you might be able to catch up, I am writing to you here as well. I apologize that it is lengthy but the complexities involved make a witty and pithy post less than adequate. Here is the gist of what I said:

On Tuesday I was supposed to begin my 28th year of teaching.

I am a special education teacher and I hold a Master’s degree in education.

I am also a writer, speaker, poet, doodler, singer, social justice activist, and probably most important… a mother.

And it is from a mother’s perspective that I want to take a closer look at class size and composition.

It seems these words are being spoken with increased frequency and are at the centre of many discussions regarding the labour dispute between BC teachers and the government, but I am not convinced that the importance of class size and composition are fully understood.

Screen shot 2014-09-04 at 9.32.30 PM

Screenshot of “Fun Fact of the day” by BC Teacher, Alison Evans ♥

This is highlighted by the Ministry of Education’s implication or suggestion that class size and composition should somehow be considered a part of the teachers’ benefits package, which is absolutely ludicrous.

If the government is serious (and I suspect they are) their lack of understanding is truly horrifying.

However, the fact that they refuse to restore the class size and composition provisions that they illegally stripped from the teachers’ contract, is a disheartening indication that this is likely the case.

Either that… or they truly, TRULY do not care about students like my son, which I find even more disheartening.

As a society, we should be investing our resources in educating all of our kids and paying attention to class size and composition is a critical part of that.

Let me explain why – from a mother’s perspective.

My son, H, began Kindergarten in September 2004 and now, in 2014, he is ready to begin grade 10. He and his peers are a generation of students who have never had the benefit of class size and composition assurances, and I can tell you with certainty, that this has had a negative impact upon their education.

You see, I am a parent of a wonderful 15-year-old son who is Autistic and needs support and accommodations at school: he thinks differently and he learns differently. But though his school put forth their best effort to support him, by the time he was in the intermediate grades, my son was spending a considerable amount of time in the hallway, usually hiding behind his coat.

And let me be clear here, although I am a mother of a son whose needs were not met in the mainstream public education setting, I am not vilifying the school or the teachers or the excellent support staff that worked to support my child. The reality is that the school, as a system, lacked the capacity and resources to give my kid what he needed.

I do, however, blame the government for underfunding the system and for tearing up the contract that guaranteed smaller class sizes with a class composition that made it possible to effectively support a student like my son.

It seems grossly unfair to me that my child was in the hallway because, given the class size and needs of the rest of the students, this seemed to be the most practical way to cope with his learning differences.

He was anxious – so he was permitted a break. The difficulty with this response was that it did nothing to resolve the situation that caused his anxiety in the first place. He was anxious because the schedule for additional support frequently did not coincide with his needs.

I suppose it might be considered some kind of a behaviour problem that my son was so inconsiderate as to need support and accommodation when there was no one available to assist him.

Yes… I’ll admit this is sarcasm, but it holds truth at its core, because the reality is that students like my son, who are not being effectively supported, are too frequently seen as a behaviour problem.

Our children’s development is impeded when they cannot trust that the help they need will be there when they need it, and when their challenges are interpreted as misbehaviour the system is causing harm.

I want my child to be in a public school where there is the time and space and resources and capacity to meet him where he is, not where he is seen as someone who must be dealt with or handled or managed. That is not the language of education. That is not the language of relationship, nor is it the language of respect and acceptance.

Rather – it is the language of compliance: the language we might use when we are overtaxed and stressed, or when teaching a class is like trying to keep ants in a paper bag.

In my experience – an anxious child should be pulled in closer to the teacher and given  encouragement and support to successfully work through the situation. This builds the child’s confidence and gives the message, I believe in you.

Instead – my child was in the hallway – hiding under his coat.

Alone

You see, the experience of being Autistic affects my son… it affects him deeply. But more than this – my response to him affects him. The responses, attitudes, and judgments of other students affect him, as do the responses of teachers, relatives, family friends, neighbours, and the attitudes and judgments of strangers…

…and the responses of government!

I worry about the way that he was at times punished at school for his ‘lack of social understanding’ and was given the message (even if perhaps it was only implied in the reaction of others) that he was bad. I worry about the lingering effects of that message on his development of a sense of self and that he may feel that he lacks worth – or that he is not good enough. I worry about the shame my child might feel, and I find myself observing him closely to try to measure and determine the depth of its effect.

I  also worry about the messages of the media proclaiming that autism is a curse, a burden, an epidemic, or a tragedy – and that my child hears and processes messages like these. I have to work hard to undermine the effects of this and loosen shame’s hold. And sometimes I worry we do not have enough time – enough awareness – enough insight and understanding to mitigate the potential damage.

The thing is, however… the most IMPORTANT thing… is that I do not want him to feel shame! I do not want him to feel that he is less because he processes and responds to the world differently than non Autistic people.

So picture my kid – under his coat – in the hall – not near the teacher – and not in the class – and then imagine the thoughts of those passing by in the hall when they see him there… for the umpteenth time.

Imagine the judgment…

What I am saying is that in addition to supporting the development of students with strategies and resources to navigate their way, our goal must also be to adapt the environment to make it a better match, and remove potential barriers.

Sometimes this means changing our language, increasing response time, meeting sensory needs, supporting alternative forms of expression and communication, ensuring and protecting the space/pace/place to recharge, and a myriad of other things to honour the developmental strengths and stretches of our children.

We can know this in theory – we can give teachers all the training – we can understand the language and believe in the pedagogy – but without the resources and capacity in the school system – the assurances of the class size and composition – all the best practice ideas and the best intentions are simply not enough.

I would love for the Premier or the Minister of Education to explain to me why a child like mine is unable to get the services he needs to support him at his neighbourhood school, because I have to tell you – we certainly kept up our end of the deal!

Explain to me how a child with a disability that makes it challenging to navigate the social aspects of the playground is somehow expected to handle recess and lunch with an adult just watching him from afar at the same time as they are supervising two or three other children needing extra support?

Tell me why a child like mine who has language – but has processing challenges, and needs support with developing social communication, is unable to get speech and language support at his neighbourhood school?

Explain to all of us why some children have such limited support that they are only able to attend school for a couple of hours each day.

Explain why my child spent hour upon hour sitting in the hallway – unable to work at school as he was so stressed?

I’d love to hear your take on the reason why a happy, sweet, and delightful boy on the Autism spectrum wound up feeling so badly about himself that we had to enlist the help of a child play therapist, and finally enroll him in a public distributed learning program to rescue him.

The experiences of my son are representative of shortcomings that are systemic: our system is in poverty and schools are taxed with trying to service the intense and multiple needs of students with a myriad of challenges.

So… the government wants teachers to consider students??

Well… when teachers stand up for class size and composition that is exactly what they are doing!

They are considering my child, and other children with special education needs. They are considering every child who is enrolled in the public education system, and those who are working to support them in their schools!

Our students are the future of British Columbia! The saddest thing is… this is their present!!

Christy Clark says Children and families first!

I don’t believe her.

WaitingforMLA.jpg

Here is a link to video  from the rally – Thanks to Langely Teacher‘s Association:  http://bcteacherinfo.blogspot.ca/2014/09/blog-post.html?spref=tw

_________________________________________________________ 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, BC Teachers Federation, BCTF, Behaviour | Tagged , , , , , , , , , , , , , , , | 6 Comments

The Ed Wiley Autism Acceptance Lending Library: Interviewing Lei

Hand in hand with speaking out and taking a stand for social justice and human rights, there is an opportunity to explore and celebrate amazing things that are happening within Disabilities and Autism communities.  There are many people creating new projects and participating in posAutive events, and expressing or amplifying the important perspectives of Autistic people and celebrating Autistic pride and culture.

One of those people is Lei Wiley-Mydske. She is the creator, curator, and Director of the Ed Wiley Autism Acceptance Lending Library.

leislibrary2.jpgYou read that right! Lei was not satisfied with the focus of the books that were available in her community, and she wanted to make books available that were supportive of neurodiversity and so she just freakin’ started her own library!!

You can probably tell I am pretty enthusiastic about Lei’s project, and I am lucky to live close enough to her that I was able to support her library fundraiser this spring, and hang out IRL now and then, but I am going to let Lei tell us more:

To begin, can you introduce yourself and share what is important to know about you?

I’m 38, I work for AWN (Autism Women’s Network) and I am married to someone who is not Autistic and we have one child who is Autistic like me.

Is there anything else that is important we know about you?

Well, I really like helping people, especially parents to understand a little more about autism. I feel like a lot of the time I might not be taken seriously, but I still keep doing it because I don’t think that things will be better for my son than they were for me if I don’t.

I don’t know anybody else who just MADE a LIBRARY! Do you remember the moment you decided to create the Library, and/or what inspired you or made you want to do so?

Well, it was a lot of things. Learning more about the laws in my state, and having my ability to parent my child questioned on the basis of my disability alone was traumatizing. It also made me want to change things so that my son would never, ever have to go through that.

My son also went through a lot of trauma in our school district because people just didn’t understand his communication. They called it non compliance when he was trying to advocate for himself. It was frustrating because I would tell teachers and administration about all of these resources like “Loud Hands” and “I Love Being My Own Autistic Self” that they had never heard of. I was actually horrified when one of the staff at his school said they had never met an Autistic adult before me. I just think if you want to work with Autistic people, you need to listen to us.

Very few people had even heard of Temple Grandin. I mean, she’s probably the most famous Autistic person around and they hadn’t even heard of her, much less all the activists who I learned about Disability and Autism and ableism from when my son and I were first diagnosed.

I was always letting teachers borrow the books I had anyway. I started to think that it might be a good idea to have a big collection of these types of books for anyone to borrow.

LeisLibrary1.jpgWe have an autism lending library in my state, but it did not have the types of books on Disability Rights and Neurodiversity that I thought were needed. Most of the books they have were written by parents or professionals. They were not written by the actual experts on the Autistic experience. There was nothing about the importance of learning about Disability History. There were books for siblings and peers of Autistic kids, but nothing to help Autistic kids find a sense of pride in their identity.

Is there special significance to the library’s name?

I named it after my dad. I just had a really good relationship with my dad growing up. Leislibrary3.jpgMost adults didn’t like me or thought I was a pain. He always thought I was awesome just as I was. My dad also was physically Disabled and I feel like if he was not Autistic, he definitely had some very strong Autistic traits. My dad died in 2002. It’s very hard for me to talk about still, but we (my sisters and I) grew up with both of our parents doing things like managing a food pantry and monthly free meals in the very economically depressed area where we lived. My parents both knew that things could be better and they felt responsible to be a part of making that happen and I think that was passed on to me. So, that’s why I named the library after my dad.

Would you explain a bit about the logistics of how you run the Library and when/where it is open, etc?

I am set up at my local community center from 11-3 every other Wednesday. I sometimes make appointments if people are unable to come to the library, and they can call or e-mail me and we make alternative arrangements… so that they can still borrow materials.

Can you share some of the feedback/response you are getting from others in your community, and beyond?

Well, since the library is new, I am still working on getting the word out locally. I have had some good response from a lot of parents though. Even some from other Autistic adults who are just wanting to learn more about neurodiversity.

There has also been a lot of great response from outside of my community. People have e-mailed me from as far away as Australia to ask me how to set up their own library. To me, that is so exciting because I think it would be great to see an autism acceptance library in every town!

Neurodiversity is a term or concept that is being used more and more frequently and sometimes seems misconstrued. How would you define Neurodiversity?

I like to use Nick Walker’s definition “Neurodiversity is the diversity of human brains and human minds.”

What are your next goals for the library and how can others help if they wish to do so? Pssst… Lei, this is an invitation for a shameless plug!

Haha. Well, I want to get more books and films. I’d love to be able to host events and guest speakers for the community.

Anyone who wants to contribute can go to our gofundme site: http://www.gofundme.com/edwileyautismacceptance

You can contact me at edwileyautismacceptance@gmail.com to send a check or money order to The Ed Wiley Autism Acceptance Lending Library

Or you can also go to my Amazon wishlist (and I recommend that you use amazon smile and choose Autism Women’s Network as your charity if you DO want to send materials to us from the wish list): http://amzn.com/w/1VS8J88S5ZQWH

Is there anything else you’d like to add??

Maybe I can also say that I couldn’t do this by myself. Like, my friend Jeff helped me to set up the bank account, get an EIN number, register as a non profit and do all that paperwork. Neil is my driver and delivery guy because I can’t drive. He also has done so much work in helping me when I get stressed out or can’t do something. Fallon helps me write book reviews (though we are on summer hiatus from that haha). My friend Irene helps a lot too. She is always promoting the library. My friends Robby and Gavin helped raise a lot of money by putting on that benefit show. Oh, and both Neil and Anabelle Listic helped me with graphics for the library. I want people to know that because I do need a lot of help to get things done and I couldn’t do it alone.

Interdependence!

Thank you, Lei ♥

In addition to creating and running the Library and working as the Community Outreach Coordinator for AWN, Lei is also a moderator of the Facebook pages for Boycott Autism Speaks and Parenting Autistic Children with Love and Acceptance (PACLA), writes a blog at We Always Liked Picasso Anyway, and was the co creator/editor of PACLA’s first magazine in April of this year. Lei is active in the online Autistic and Disabilities communities, and some would call her an social justice and civil rights activist. She is AWESOME!

Leiatthefundraiser.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 acceptance, Autism, Autistic, Father, Neurodiversity | Tagged , , , , , | 2 Comments

Sounding the Alarm… there is no acceptance here…

Screen shot 2014-07-18 at 1.37.36 AMOn Tuesday, July 15, I was still editing the comment below for the Autism Speaks docutrauma, Sounding the Alarm: Battling the Autism Epidemic, which is currently on Netflix. My intention was to leave it in the reviews section on Netflix with a one star review… and, to be honest, I was considering doing so without actually watching the film. Messages of fear and negative stigma about my child and other family members and my friends are not high on my list of the media I am eager to consume.

“As a mother of an Autistic teen and a Special Education Teacher, I find this film offensive.

I daily see the impact of the negative stigma spread by Autism Speaks. AS tells my child, my students and their families that Autistic people are a burden, an epidemic, and a tragedy.

I encourage those who view this film to look deeper… because the stigmatizing rhetoric in this film is a part of a constant stream of dehumanization and fear mongering from Autism Speaks and it needs to be ended.

I hope that after watching this, people will be curious to learn more about the experience of being autistic from Autistic people or an organization that includes Autistic people, rather than one that systematically silences them. Situated within disabilities communities, there are a multitude of sources of information that support Autistic people and their families with acceptance, and a strength-based perspective, such as the Autism Women’s Network, ASAN, and Parenting Autistic Children with Love and Acceptance (PACLA)

As an educator and a parent, I implore people to look beyond the limiting stance of Autism Speaks, and I invite them to become a part of the movement working to effectively support Autistic people as a valued part of diversity that is the human experience.”

I had read the other reviews that were being posted on the film and there were about 40, and in my estimate – 35 of them were negative. The reviews that were panning the film listed numbers like 22/22 people found this helpful, or 14/14 found this helpful, and conversely, the reviews that held the film in a favourable light had but 1 or 2 helpful votes.

I was considering a blog post… to get the word out that there were alternatives to this film and to encourage others to do express their concerns.

On Wednesday, July 16, almost all of the negative reviews had been disappeared

Frankly – I was shocked! Autistic people are used to being silenced and excluded from the conversation by Autism Speaks, but this was not something I expected from Netflix.  Go ahead… call me naive.

On Thursday, July 17, my friend, Lei Wiley-Mydske, announced that she was planning to watch the film and live-tweet it… and so I offered to join her.

I also explained to H what I was doing and why, and I invited him to join me. His response was, “Not a freakin’ chance! I’m not watching that crap!”

I am so glad he didn’t. It was far, far worse than I expected… and I hope everyone makes the same choice that H did.

I was grateful to watch the film with Lei, but it was difficult and I cannot recommend not watching Sounding the Alarm strongly enough…

A  few weeks have passed, and I feel I am finding my way to write about this. But I must admit afterwards I was shaken, angry, sad, frustrated… reeling! It reminded me how far we have to go to change the widespread stigma promoted by Autism Speaks. They are the big guys here, and they silence Autistic activists and those who care about them by saying they are fringe radicals, or they dismiss Autistic people by throwing around functioning labels as it meets their needs.

I really don’t have the capacity to say much more about this crappy experience, but fortunately I don’t need to because Lei has written an eloquent review of Sounding the Alarm for the Autism Women’s Network which you can find here. ♥ Thank you, Lei!

You can view the Storified version of our live-tweets here.

I will end with Lei’s Netflix review of the film, which is one of the comments that has been deleted:

Horrifying, and not because of Autism, but because of the disrespectful and dehumanizing way that this documentary treats it’s subjects. Autism is NOT a tragedy. Disability is NOT a tragedy. This is really disgusting fear mongering and if you care at all about the dignity and value of your Autistic loved ones, you will not watch this film.  Lei Wiley-Mydske

And if anyone else has a comment that was deleted from the Netflix I invite you to leave it in the comments below…

_________________________________________________________ 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, Activist, ASAN, Autism, autism stigma, Autistic, Boycott Autism Speaks | Tagged , , , , , , | 18 Comments

Road Trip Activism… #BoycottAutismSpeaks

The other day H and I went on a road trip to Bellingham, WA. We talked long, as is our habit on lengthy drives, and had the chance to explore all sorts of topics. We also nabbed the chance to take a few photos in front of an Autism Speaks billboard.

We have driven by this billboard so many times – and each time I have cringed as we discuss the rhetoric promoted by Autism Speaks, because I wonder if the positive messages we give our son are enough to mitigate the constant barrage of negativity in the media.

But this time we stopped, and when we did so, I could see that H stood a little taller…

H and I will feel different from now on when we pass that sign because we shifted things to create a message of pride.  This action, though it may have been relatively small,  empowers him and builds his understanding that he has a right to rail against stigma and to fight for social justice.

ASBillboard4.jpgASBILLBOARD3.jpg

It was an opportunity to encourage and support H in rejecting negative stigma.

I want my son to stand strong against organizations and messages that work to tear him down, or shame him because of his neurology.

I want to my son to know that he is accepted…

That he is not broken…

That we all need support…

That he has a voice and perspectives that are valued…

That he has a right to be heard…

ASBillboard2.jpgImage description: A young man who is wearing a hoodie is standing in a grassy field looking toward an Autism Speaks Billboard which contains the 1 in 110 statistic about diagnosis and urges people to “Learn the signs.” A #BoycottAutismSpeaks sign has been added under the billboard. Text on image reads: “I want my son to stand strong against organizations and messages and that work to tear him down and shame him, or tell him he is broken, because of his neurology.I want him to feel proud that he is growing up to be an Autistic adult. That is why I #BoycottAutismSpeaks”
 

I want H to feel proud that he is growing up to be an Autistic adult.

That is why I boycott Autism Speaks!

Please check out these petitions and links to find out more and take action to support the Boycott Autism Speaks movement:

• Website: boycottautismspeaks.com

• On facebook: Boycott Autism Speaks

• On Twitter: @Boycott_AS (check out hashtags #BoycottAutismSpeaks and #EducateSesame)

• Petition: To the Corporate Sponsors of Autism Speaks

• Petition: to Sesame Street Reconsider Partnership with Autism Speaks

_________________________________________________________ 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, Activist, Autism, autism stigma, Autistic, Boycott Autism Speaks | Tagged , , , , | 5 Comments

Autistic Sun

“The image is called Autistic Sun.

That is what it stands for.

Do not trust the puzzle piece.

Do not live with fear.

Just be yourself.

Autistic people can make the world their own.”  H

HSunImageImage description: A mixed media painting (acrylic and black ink) of a golden sun peeking over green rolling hills, surrounded by a brilliant purple sky.  In the centre of the sun there is drawing of an open eye. Yellow rays, decorated with patterns and designs, radiate from the sun. A yellow road with a fence beside it leads across the hills to the horizon and follows the path to the sun as it fades into the distance.

LetterstoAutistickids.jpgH offered to share his painting for use on a new project, Letters to Autistic Kids: To Autistic kids from Autistic kids and Autistic adults (who used to be kids) with love and solidarity.

We need to signal boost this wonderful new project (curated by my spectacular friend Ibby ♥ of Tiny Grace Notes ) because these are the kinds of messages and resources our young people need.

 

Please check it out and give this wonderful site your support!

_________________________________________________________ 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 part of the T-21 Down Wit Dat Blog Hop: Click here to enter your link and view the other participants.

Posted in acceptance, Autism, Autistic, Autistic People Speaking, Letters to Autistic Kids | Tagged , , , , , , , , | 5 Comments

Blacksmith at the Forge + The Music of Invention

It is summer, and with summer comes that certain sense of freedom in the days that stretch before us filled with possibility.  It is like that one gift under the tree that hasn’t yet been opened. In all honesty, I like the idea of that feeling of possibility, more than anything the package could actually contain.

Summer is like that… if you approach it the right way; like an unopened present or a wonderfully long snow day.

We work to have some of that feeling every day for H, during the school year as well. That is a part of the reason we choose distance education to support us in home schooling our boy. We want him to have the freedom of possibility and the place and space and pace so that he has the resources to pursue his interests. We want him to have the room to explore, create, and problem solve with his inventive mind and curious nature, to succeed and to sometimes fail, and to practice the skills and attitudes of self-determination.

Today, on a day that I think is entirely too hot to choose such a workplace, H is tucked away in the garage. I smile at the rhythmic, metallic clang and pounding, eventually followed by the lovely squeek-swing-bang of the screen door, chased by the tapping of his shoes on the back stairs. At our house… this is the music of invention.

H comes in, exuberant, and very warm… and sooo proud it fills the room:

“I am a Mini Blacksmith. Look Mom! Look what I made!”

TuskenRaider1.jpgH had fashioned a Gaffi Stick for his Lego Tusken Raider out of a nail.

After H had cooled down a bit with the generous help of a popsicle… he explained:

“I made this the same way all blacksmiths do it. I heated up the nail a bit with a hand torch, which is a small butane welding torch, and I used a small hammer and anvil and pounded it until the end was flat. Then I had to cool it down in water. It hissed as it cooled. I learned how to do this by researching it on the internet.”

Tuskenraider2.jpgIt wasn’t until well into the cool of the evening that H revealed to me that he had actually forged three micro weapons.

TuskenRaider3.jpgAnd before he went to bed, he confidently declared, “It was a good day. I really am a blacksmith!”

I must concur with the blacksmith… it was a good day.

And now, in the cool relief of evening, I’m reflecting that a butane fueled torch isn’t going to cut it for long, and that H may eventually need a full size anvil and a larger hammer if he is going to work with the three-foot piece of steel that he recently acquired for his next project…

But my job in this, and it is harder than it seems, is to sit back and let him figure it out…

_________________________________________________________ 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 part of the T-21 Down Wit Dat Blog Hop: Click here to enter your link and view the other participants.

Posted in advocate, Autism, Autistic, Distance Education, letting go, self-directed learning, Space and Pace | Tagged , , , , , , , , , , , , | Leave a comment

#Crapcessibility

I have been hanging in Bellingham with my friend Corbett O’Toole, who raised a child with a disability and is disabled herself. We have had a spectacular time. We’ve seen a few sights, driven Chuckanut Drive, and enjoyed some fabulous meals – but the best part has been the chance to connect and talk about our experiences and how they intersect. I have been gifted with a sense of confidence about the next steps I need to take to support H’s development as he transitions to adulthood, and about my ability to support him in being his authentic self.

We’ve had frivolous moments, witty interludes, and deep conversations about a myriad of topics, from childhood development, to fear, to processing, to parenting, and activism in disability communities.

As Corbett was telling me about her hotel adventures on the first leg of her summer travels from San Fransisco to Bellingham, she shared that some of the access accommodations were less than helpful. She has been collecting pictures of signs and access issues and visually documenting some of the best and some of the worst. In her hotel, for instance, in a room that is supposed to accommodate someone who uses a wheelchair, they apparently assumed their patrons would have ability to levitate or to have telekinetic powers to psychically transport items through the time space continuum

So, as a non-physically disabled person it was eye-opening to me, as is often the case when we come from the perspective of not needing a certain accommodation – or having issues of access. This has also been the case for me in with my interactions with Autistic people; it helped me understand the needs of those who might experience the world differently.

I was shaking my head in disbelief, and Corbett and I were both being sarcastic and rolling our eyes…

I said, “This is not access, this is crapcess”

…and thus the term crapcessibility was born…

Crapcessibility2Photo description: Corbett is sitting sideways to a very high sink (it’s at the height of her armpit) with her elbow on the top of the sink and a toothbrush in her hand. She is wearing a tshirt that says “Criptiques” (from the book). The text below the photo says: “Crapcessibility: pioneering a new trend… the armpit high sink…” In smaller text: “#crapcessibility” and “Thirty Days of Autism: Leah Kelley” (Image description by Corbett O’Toole)

Thank you, Corbett ♥

Your friendship, your fabulousness, your commitment to social justice, and your willingness to share your perspective and experience are very much appreciated.

You can explore Corbett’s collection of writing and body of work on her website at: www.corbettotoole.com

Corbett’s oral history can be found at: http://bancroft.berkeley.edu/collections/drilm/collection/items/otoole.html.

_________________________________________________________ 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, Activist, Autism, Corbett O'Toole, Crapcessibility, perspective of others | Tagged , , , , , , | 1 Comment

Why a teacher??? #thisismystrikepay #BCTF

Today on the picket lines, my colleagues and I were approached by a woman with two adorable dogs. I asked permission to take a picture of her sweet basset hound to use on social media in support of the strike.

She immediately agreed and was delightfully supportive of us teachers and what we are trying to achieve.

As we chatted, focused on getting the dog and one of our picket signs to align in the photo, she suddenly looked up at me… and then simultaneously hugged me as she queried, “OMG – Ms. Kelley?!?” 

She recognized me…

I taught her son, Ty, when he was in Grade 2…

I immediately remembered him…

I somehow even pulled his last name out of my teacher hat…

She reminded me of the Circus Show movie I made with that class (as I did with many of my classes) and how we made it look like her boy was shot out of a cannon.  We subtly <sarcasm> created a stunt double with a plasticine figure on a piece of wire for the part where he was blasting across the room. It was very high-tech…

If I recall correctly, Ty may also have been the Ring Master in our film.

These films were a hoot. I had an old, very heavy VHS camera, upon which I had to edit the film as we were recording. And though our special effects may have been a little sketchy, my primary classes and I recorded circus shows and fairy tales and such, where every child in my class had a role and was a star. I suppose I was director, producer, camera person, crowd-control, and pied piper, but the kids were stars and we worked together make the sets and the costumes and plan the shows. Sometimes the camera was shaking because I was laughing so hard, and Ty’s mom told me that I can be heard laughing on the recording of that year’s movie project.

After we were done we would invite the students’ families to our Premier, and then I painstakingly copied a video for every student. And truth be told, today is not the first time I have heard that one of these videos is still a treasured relic from a primary school past.

I am so grateful that Ty’s mom shared with me the impact I had on her son and how the experience of being accepted shaped his feelings about himself. This kid was a live-wire and needed time and assurance, and I spent many-a-day at the end of class talking with this parent and working out strategies with her to positively support the development of her child.

That is what we do as teachers.

We change lives…

Sometimes with little things…

Or in ways we may never see…

I needed this reminder.

I am a facilitator, conflict management negotiator, counselor, confidant, cheer leader, researcher, social worker, shoe tier, lunch maker, firm reliable guide, band-aid provider, crossing guard, co-learner, reader, curriculum organizer and creator, equipment demonstrator, actress, singer, poet, comedian, furniture mover, artist, dream giver, hot lunch distributor, role model, political and human rights activist, cartoonist, tear wiper, scientist, sociologist, puppeteer, group dynamics expert, leader, writer, eraser provider, story-teller, advocate, opportunity creator, inclusionist, supporter of diversity, bridge builder, pied piper…

… I am a teacher!

What a treat it was to meet this parent from so many years ago…

And to hear about this little blonde boy, Ty, who is 26 now…

He is getting married this summer… and they are showing the movie at the reception!

This is my strike pay!

Hound.jpg* A final note: It is of critical importance to understand that 18 years ago, when I taught the class that Ty was in, my class size was usually between 18-20 students, and I had the time to pay attention to each child, and take on projects that stretched all of us to our creative limits. This was prior to 2002, when the language for class size and composition was still in our contract. I am so appreciative of the lovely interaction today with Ty’s mom, that has me thinking back on all the amazing child-centred learning and projects that I was able to undertake with my students. I am renewed in my conviction that we need to continue to fight return class size and composition language to our contracts, and to take a stand to protect public education.

_________________________________________________________ 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, BC Teachers Federation, BCTF, Educator, social justice | Tagged , , , , , , , , , , , , , , | 3 Comments

Uncomfortable… So what?!?

30-days-of-autism-and-einstein-quoteI have been thinking about how often we are uncomfortable with feeling uncomfortable (which I cannot help but note is ironically circular in its very definition), and that I have observed and experienced the inherently powerful and positive opportunity that exists in how we choose to respond to our discomfort.

When considering this from a cognitive perspective, uncomfortable is often the response to the metaphorical wedge of new ideas, or a perspective that differs from what we have held as truth. These feelings of discomfort – sometimes referred to as cognitive dissonance – can function as a barometer of sorts, indicating that we need to pay attention and seek out more information, and re-evaluate what we considered to be our truth.

When I am questioning my assumptions and broadening my perceptions to be inclusive of the experience of others, when I am curious and listening, then I am adjusting my subjective reality… and that is when growth and change happens. Digging-in to these moments has at times shaken me to my core, but it has also resulted in some of my deepest and most profound learning and understanding.

That uncomfortable feeling of cognitive dissonance acts as the indicator that points me to something I need to be considering. If I am responsive to this, it denotes something important and asserts: “pay attention to this – this doesn’t align.”  I will continue to resist the seemingly natural urge to respond to discomforting signifiers with avoidance or denial… and work instead to be willing to deeply question my assumptions and my stance.

It may not be comfortable… and working to be comfortable with discomfort may not be easy, but so what?!? I will continue to lean in…

Photo: L. Kelley: Thirty Days of Autism

Photo: L. Kelley: Thirty Days of Autism

_________________________________________________________ 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, being wrong, discomfort avoidance, Handling Change, handling discomfort, listening, Loud Hands | Tagged , , , , , , | 5 Comments

Ode to the Stim: the printable sequel

I have received a number of requests for printable copies of this poem. Here it is – as a jpeg – which should be easy to print if you so choose.

Image description: White background framed in blue. There is a poem beside a stick figure drawing of a happy looking person flapping their arms. Text reads:  "Ode to the Stim. H stims… I stim too… bounce and wiggle, twist a lock, hold tight to that ‘calming rock’, fiddle and fold, squint and spin, squeeze, and then begin again, shoes too big so toes can move, wiggly legs that find their groove, Tom Sawyer pockets with fidgits galore, quiet hands are such a bore.  Leah Kelley – July 27, 2013. Thirty Days of Autism. To stim is to breathe... Honour the stim...

Image description: White background framed in blue. There is a poem beside a stick figure drawing of a happy looking person flapping their arms. Text reads: “Ode to the Stim. H stims… I stim too… bounce and wiggle, twist a lock, hold tight to that ‘calming rock’, fiddle and fold, squint and spin, squeeze, and then begin again, shoes too big so toes can move, wiggly legs that find their groove, Tom Sawyer pockets with fidgets galore, quiet hands are such a bore. Leah Kelley – July 27, 2013. Thirty Days of Autism. To stim is to breathe… Honour the stim… “

Again, I could write more about this… but I still think this visual pretty much sums it up for me right now. Additionally, there are already some amazing posts that say what I would like to say or consider… so I am linking them up here:

Socially Inappropriate by Musings of an Aspie

Things my autistic kids love: Public transit by Small But Kinda Mighty

Way-To-Stim Wednesday: Video Series by Anabelle Listic

Stimming by Outrunning the Storm

Quiet Hands by Julia Bascom

Enjoy!!

______________________________________________________________

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 acceptance, Autism, Loud Hands, poem, poetry, stim | Tagged , , , , , , , , , | 15 Comments

Easy Silence: I am still learning to communicate

Leah Kelley:

Yesterday I saw a disturbing video posted on facebook – where a child was being forced to say “mama” or make an “mmm” sound.

All the communicative efforts of that little girl were ignored, which was dishonouring of the child. What I saw was a compliance based approach that is destroying of trust and damaging of a relationship this young child should be able to count upon (her parent).

And from an educational perspective the desired behaviour was so narrowly targeted that success was a long shot. That does not build confidence and capacity – that is not how good responsive teaching happens. I suspect that she did not even understand why she finally got the fricken gummy.

Good teaching (and parenting) is a dance – with two (or more) partners…
It is give and take…
It is turn taking…
It is “Here, you take the lead for a while…”
It is “I see you…” “I hear you…” “I understand…”

Here is a post from the 30 Days archives that I think is relevant to consider…

Originally posted on Thirty Days of Autism:

I was once working with a child on the autism spectrum… (not H) and this opportunity had me considering, I mean really considering, what it must be like to be him. He had so many challenges and did not use words to communicate. He did communicate though: his actions and his behaviour were his communication, and it was up to the rest of us to figure it out and learn his language.

How often do we have our world, our schools, our expectations set up so that it is those with the social cognitive challenges that are expected to “fit in” and “get it”, instead of having those of us with the social cognitive strength doing the work – or at least a fair part of it?

Our work together was challenging, but often joyful. I was relaxed and counted upon his ability to communicate the pace, and my…

View original 239 more words

Posted in Autism | Leave a comment