Gathering at TASH and The Magic People Map

Before the TASH Conference, I was working this an idea to create a sort of People Map for H, so that he could be a bit more ready for the peopleing and could begin ahead of time to see faces of people he will meet and match them and connect them to things he knows about them as my online friends.

Amy Sequenzia: Magic Card

Amy Sequenzia: Magic Card

I was thinking this would be a way to frame it and support him with the visuals for people and a little bit of familiarity ahead of time about what is important for them… and also it would let me sit back and not be the over-prompting anxious mom from hell (which is very not good for anyone).

Lei Wiley-Mydske: Magic Card

Lei Wiley-Mydske: Magic Card

And then I thought more about the people map and decided to explore making Magic the Gathering cards for each of these people, because he is familiar with the game and I wanted to match the support to be useful for H to help him navigate the conference… and I thought it would be fun (and infinitely cooler).

My intent was also to use this to help him be aware and frame his response in context. I also thought it would be a wonderful way to connect our next generation… and help them to build a sense of community – in a way that builds understanding and acceptance for each other that could be quite powerful.

Emily Titon: Magic Card

Emily Titon: Magic Card

So I ended up making a set of 24 cards for H (and a whole bunch of other people) and I must thank my friends so so much for their enthusiasm (Kassiane and Emily) and their cutting skills (Corbett ♥) and for being so supportive and open to my wild ideas – I appreciate your trust and encouragement.

And – as I was trying to maintain my momentum on this little project, I was also working to front-load H with information about TASH. I knew he would be more comfortable if he had information about where we were staying and with whom, and who he would be meeting, and more. This is safety for him. It is calming. We can make a situation familiar before we encounter it, and when H can focus on understanding the needs and differences of others – beyond himself – this is partnered with a certain calming effect as well.

Kassiane Sibley: Magic Card

Kassiane Sibley: Magic Card

So we had been talking… a lot!

One of the things we discussed was that some people he would meet might communicate differently. H seemed to take this in stride and I was left wondering at how easily he accepts this (though perhaps admiring is a more accurate word).

We were in the car when we discussed this part, so I couldn’t see his face, but I could imagine a raised eyebrow that I was making such a big deal out of something so inconsequential.

Oh… but I love his attitude.

Purkinje: Magic Card

Purkinje: Magic Card

Then our conversation shifted to how people are sometimes judged by others by their ability to communicate with spoken words, and we moved to the notion of presuming competence, and his interest was noticeably piqued:

Is that why Henry [Frost] had to fight to go to school? Because his words are not spoken??

He knew that Henry had fought for this right – but until this moment, H hadn’t fully understood why…

That is so ableist!

And that ^ THAT RIGHT THERE ^ was the first time I have heard H use the word ableist.

Ibby Grace: Magic CardCan we freakin’ see how easily this kid gets presuming competence, the need to accommodate others?

This comes so naturally – effortlessly!

My Autistic son’s attitude of acceptance is one of the spectacular things he has in common with my Neurodivergent friends.

And it makes my heart sing!!

Related post:
http://theautismwars.blogspot.ca/2015/01/neurodivergence-and-representation.html?spref=fb

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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, Activist, Anxiety, Autism, scaffolding, support, TASH, visual strategies, visual strategies and supports | Tagged , , , , , , , , , , , , | 5 Comments

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…

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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, 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 , , , , , , , , , | 6 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!!

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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, 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: https://30daysofautism.wordpress.com/2013/08300px-Pluma-azul/16/problem-solver-and-redefining-independence/
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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, accident, Activist, Autism, Goals, letting go, Space and Pace | Tagged , , , , , , , , , , , , , , | 9 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

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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.

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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…

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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)   

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 , , , , , , , | 4 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

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

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

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

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

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

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

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


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