As I contemplate my blank screen… I hear the lovely tones of the piano drifting up the stairs from the basement.  Craig The Amazing

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

I lift my focus from my writing.

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

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

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

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

Craig and I are the same in so many ways…

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

I was describing this to Craig:

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

Sometimes the drifting up is hard indeed…

The splitting of attention…

The shifting of gaze…

The alteration of focus…

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

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

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I am okay with that.

I will keep working on it anyway.

Feet on ground…

Heart in hand…

Facing forward…

Be yourself…

Parenting is dynamic… it shifts and changes… and we get a part of it moving smoothly and something else, some other variable throws a curve. I know there will be ups and downs and wonderful moments and some that will come near to ripping out my heart. That it is dynamic, brings challenges and struggle… but it also brings the joy and marvel of this journey.

Feet on ground…

Heart in hand…

Facing forward…

Be yourself…

Today Craig the Amazing took us out for a Burger Brunch (Unusual – yes – but it suited us quite perfectly – and we may just be starting a new line-avoiding tradition) and H gave me this card and these lovely flowers.

I love that my son’s card reflects his sense of my acceptance of who he is… this is a part of how he will come to have acceptance within himself.

That made my day!

When, I asked H a bit about the card,  he elaborated with, “C’mon, it’s Snoopy! You can’t argue with that!”

I must also express appreciation to my Mother for modelling and teaching me about integrity, kindness, being myself and about resilience.

It is a positive legacy… as we make our way on this far from ordinary… and yet, conversely, extraordinary journey!

Feet on ground…

Heart in hand…

Facing forward…

Be yourself…

Please Note: This post has a theme song… Take a listen to this great song from one of my favourite Canadian artists, Jann Arden: Good Mother

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

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

These days of warmth and sunshine are irresistible though.

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

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

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

Seriously – they called on H…

H abandoned his electronics and went out to play…

He is outside playing with them still…

I don’t think Finnegan the Labradoodle is impressed!

But these two cats sure are!

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

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

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

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

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

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

and quiet…

and the opportunity presented for H to take the lead…

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

and the positive power of complete acceptance…

This THIS is joy!

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

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

The dining room table is shaking with his laughter – which makes it hard to type – but adds joy to my world.

I love that this man is such a fan and still cracks up at cartoons. I remember a childhood promise that I would grow up to be like that. Somehow that slipped away from me, in spite of my intent… which makes me appreciate Craig all the more.

We are sipping dark French pressed coffee, and we probably look like we are ready to engage in a game of Battleship.

We drift up… every once in a while…

Engage in a bit of conversation…

But find comfort in the quiet of our own thoughts as well…

Craig may interject a lovely bit of history about the voicings or the music of  the Looney Toons.

I share some of what I’m reading and how it intersects with my thoughts and perhaps our lives…

Craig shifts to steaming Sarah Vaughan…

We are in the moment…

Simply marinating and rejuvenating in what feels like stolen time…

And connecting…

And appreciating ordinary things…

little things…

as our teenager sleeps in…

and the sun streams in the windows…

on this rare, calm, uneventful…

Sunday morning at our house…

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

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

Reblogged from Thirty Days of Autism:

A couple of weeks back, I was asked to write something on the theme Embarrassing Moments. This has been rattling around in my head for a while now as I have been considering a couple of different ways that I could approach this as a topic.

One approach would be to consider ways that my son with autism/autistic son has embarrassed me...

Read more… 734 more words

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

Um… ya…

So that is the first ausome thing. Right there!

That!

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

That is AUSOME!

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

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

That is AUSOME!

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

That is AUSOME!

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

That is AUSOME!

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

That is AUSOME!

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

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

That is AUSOME!

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

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

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

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

That is AUSOME!

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

That is AUSOME!

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

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

That is AUSOME!

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

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

And that is AUSOME!

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

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

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

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

We know you have been waiting… and we have been working and organizing behind the scenes. Now we are ready and we are excited to announce the theme for the second annual Autism Positivity Flashblog Event on April 30th, 2013: “1000 Ausome Things #AutismPositivity2013″

Last year hundreds of bloggers came together in a show of support and solidarity in response to an anonymous person’s Google search “I wish I didn’t have Aspergers”. The posts that came flooding in from all over the world were a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we invite each of you to share one, or two, or more “Ausome” things!

We invite all of you, anyone who is Autistic, anyone who has an Autistic person in their life and all who blog about autism to share a message of support, wisdom, hope, and pride to this year’s flashblog by posting to https://docs.google.com/spreadsheet/viewform?formkey=dDdPQjAxV244VjdCcXdYX0pPQ0RBblE6MQ

Please join with us on the last day of Autism Acceptance Month – April 30th, 2013 – in a Flash Blog of Autism Positivity.

To participate:

1. Publish your post on April 30th in the following title format: “ [Your Blog] celebrates 1000 Ausome Things #AutismPositivity2013″

2. Share your post on Twitter, Facebook, and any other social media site using that hashtag (#AutismPositivity2013)

3. Add your link to the Autism Positivity website and grab the badge.(submit here or above)

4. Share/reblog this message to your blog, page, etc.

Thank you,

The Autism Positivity Project Flashblog Team, 2013

If you have any questions, please contact us at autismpositivity@gmail.com

Please also support this project on facebook, pinterest, tumblr, and twitter! AUSOME!!

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

Recently I shared:

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

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

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

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

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

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

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

It makes me cringe.

I am uncomfortable… but I will lean into that.

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

This othering...

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

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

yet...

I am a work in progress – and that is not an excuse for my lack of understanding… rather it is a commitment to continue to listen carefully to what Autistic people are saying about their experience and to work to understand and support their perspective.

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

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

It is Sunday morning – and I asked H to help me with this post. I want to talk with him about Autism Awareness/Acceptance.

It is April 1st… do you know what that means??

It means we get to goof off.

H is now telling me about the best place to buy whoopie cushions and fake turds. (His words not mine.) He is 13 so I indulge this for a couple of minutes and I also suggest he pour himself a glass of milk… I figure this will anchor him (figuratively) to the table and assist me in a redirect… (Silly me!!)

OK honey – I want to talk to you about something else.

Mom tell every one out there if they like pranking – they should go to ‘Deal Extreme’.

I want to talk to you about somethings else: It is not just a day for pranks – it is also the start of Autism Awareness/Acceptance month. What is one thing you would tell people about having autism?

I get cool ideas like how to make stuff and to design cool things out of Lego. Then: I can’t believe it is April.

He is now off looking for his sack of jokes and tricks – I think he is trying to come up with some trick to freak his dad out.

So this is the reality… it is not about what I want… or what I want my kid to want… The message for this first day of autism acceptance month is about honouring the person and appreciating them for where they are at this very moment. My son is perfectly being a 13-year-old that is thrilled to be pulling pranks on his father this morning.

I helped him to make the finger in the box trick – which was a new one for him. He pulled out his nail through the finger illusion, and now he is messing with some invisible ink.

He is interacting with me and with his dad and he is loving the response and emotional connection! Anticipation, interaction, joint attention, prediction, emotion sharing!! This is SOCIAL!!

Update for 2013:

Today was much the same as last year. H again wanted to prank his Dad, but apparently, with a more dramatic ‘injury’. Ya… not sure what to say about that. Once he’d done his ‘prop arm injury’ with masking tape and not-quite-permanent permanent marker, H realized his dad had headed out to do some errands.  Not to be thwarted by small details, we took advantage of his special effects effort by filming another hilarious scene for his movie. Craig viewed the scene and a few stills when he got home, and… today I got to be behind the camera. Whew!

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

© Leah Kelley, Thirty Days of Autism, (2012) Reposted (2013)

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

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

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

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

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

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

                     ~

A point of interest…

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

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

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

A leading question if I ever heard one…

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

Oooooh… spare parts! Something new to take apart!

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

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

And you know what?

Craig and I most certainly will say ‘YES!’

                     ~

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

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

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

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

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

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

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

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

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

And through all this I will know that this is really what this journey is all about: honouring H with the space, pace, and place to appreciate the wonderous and spectacular aspects of being his own authentic Autistic self…________________________________________________________