~ an Experi(ence)ment that steps through the looking glass of an Autistic adult

Autistic Me, Daily

A post a day for the entire year. Welcome to my Experi(ence)ment.
Jul
7

Day 189 – Worlds Collide – Advocacy, my Member of Parliament and Me.

Where did that seagull come from?” asked my Member of Parliament as it stopped her in her tracks on her way to greet me.

Sitting on a shelf was a beautifully carved piece of folk art. A seagull in flight. It was quite large, pretty well gull life sized and we all admired the craftsmanship.

It apparently was new to the office.

So was I.

I was 6 years old when I saw Prime Minister Pierre Elliot Trudeau rushing through the halls of the Parliament Building in Ottawa. My Grandfather took me to see them. He thought it was important that I understood the political process even from such an early age. And I, being so unlike most other kids my age embraced the opportunity with gusto.

I only caught a glimpse of him- but it was enough to totally enchant me. To me he was a King and I was in his castle. I felt like I was now more special for even just being near all of this.

trudeau

41 years later I am standing in my Liberal MP’s office after requesting a sit down meeting. I’ve got my paperwork in a nice folder. I’m not entirely sure how to begin and I am hoping I know how to end!

A Seagull, huh? Okay Universe, we start with a carved seagull.

Autism Nova Scotia helped me out so much by giving me some material to take in a wonderful CASDA folder. So I started with a bit about me and how I came to be sitting her office as an Autistic advocate.

Then I got out the papers from the folder. I felt a bit scattered for a few moments. Thank goodness for all the preparation. I didn’t panic, I knew my scripts would mostly find me.

I talked about the work I, and my fellow Autistic advocates are doing on the CAPP Project.  How that came to be and why it is so important. I made sure she heard, at least a dozen times how the involvement and inclusion of Autistic adults is really just mandatory at the point in the game. I let her know that we are often bullied to the point of breaking when we try and add our experiences to the conversation.

Not carved seagulls - I took this on a cold Feb day in 2007

Not carved seagulls – I took this on a cold Feb day in 2007

I decided as I was writing this that I would create a separate page for the part of my talk that I typed out last night to help keep me on track and to leave with her. So if you want to read that before you continue (certainly do not have to though. No pressure or expectation about that)

It’s:

[ MP Presentation ]

Because I knew I was leaving the paperwork with her I calmed myself about how I was not reading from my paper like I thought I would. Here’s where my Grandfather’s influence shone through again. Long story short — I did a lot of public speaking for a few years in my teens/later teens through being involved In the LEO Club.

I talked about as many things as I could from my typed words. I relied a lot on me, because isn’t that the pinnacle for what I am doing? Being authentically me?

I glanced down one time and saw where I had typed out, “there is no severe Autism” and quickly found a way to bring the conversation there. It caused a reaction so I found myself spending a bit of time on that because I knew sitting there and being mostly physically abled looking and able to express myself, it is  ingrained to think “high functioning“.  I explained that I could be “severe” in 5 minutes in other circumstances. I opened up about periods of being non-verbal.  I got to explain functioning labels and their effects.

And that led me to be able to talk about ABA Therapy. I was able to relay information that while not my direct experience, it was information about it’s PTSD inducing history.  My Therapist has said in some ways I am lucky I didn’t know till later so I avoided such fates.

Flowers Inside the Rain (c) Patricia D. George-Zwicker All Rights Reserved

Flowers Inside the Rain (c) Patricia D George

She asked me what I wanted from her. It threw me, of course, it’s HUGE, it’s like, How are you? See, I had originally called because I was quite concerned about language on a proposed resolution I had read. I came into it too late though, so fair. It was not logistically possible to meet with my MP. The resolution had passed. There was a language change.

I wanted her to know Autistic adults would like to be included in the conversations and decisions that can effect us. We are such an un-tapped resource. And that the language used to describe us often forgets to include how hearing/reading would make us feel.  So I asked her to help make that change.

She gave good advice about other political routes I could take, Provincially especially. I was very grateful to be taken seriously. There is progress happening. And I am also very grateful for the experience as it is helping me grow and learn as an advocate, and a person. I thanked her for that too.

I know I wasn’t able to be as cohesive as I would have liked about the CAPP part of it. I decided to rely on the paperwork I was leaving to help with that. Allergies hit me hard the night before. I did struggle with finding words at times. But that’s who I am. Hiding myself kept me from getting involved till later in my life. The work I do on the project very much is part of each step it takes. So I should be confident in the information I left. My work can stand for itself.

I also asked 2 more things from her. I asked if a letter Autism Nova Scotia helped prepare could be delivered to Health Minister Philpott. I hoped there was an in house system to deliver such things, and there is so yes, that is going to happen! Very happy about that. I’ll add the letter to the MP Presentation page.

And this is the thing I was the most excited about being able to ask for help with. Featuring some beautiful artwork provided by Autism Nova Scotia’s Arts Program I left her some posters that have the URL for a very important survey that I am a bit late sharing. From the website…

This survey is important because CASDA and the National ASD Working Group will use the information to determine the direction of the Canadian Autism Partnership Model and to inform the business plan that will be submitted to the federal Minister of Health in November 2016.

Here’s a link to the Projects Objectives — [ Project Objectives ] to learn more.

And to the — [ SURVEY ]

I’d be ever so grateful if you’d share the link to the survey. It’s an effective way to be part of the collective voice going forward in Canada in regards to how Autistic people are treated and the services needed and where we need to focus our time and money effectively.  I truly believe in this process I am part of. It’s given me a sense of direction and purpose in my life.

Feathers Fall Around You

Feathers Fall Around You – (c) Patricia George. All Rights Reserved.

My Mom drove me to the meeting. I’ll be unpacking the layers of how important that is to me for a long time to come. As we drove and she asked me where I get this from. “You don’t get it from me” she said.

I get it from Granddad…and Nanny” I said

Granddad told me from the time I was very little that he went to war so his future children and grandchildren could be free to speak their minds, to not feel separate from the process but instead a part of it

You know Nanny never shied from speaking her mind?” both a question and a statement.

She agreed. My Grandmother didn’t suffer fools.

This is more like the life my Grandparents wanted for me. To be of service. To be kind but firm in my resolve and convictions. To be heard and to listen. To be myself and embrace that I walk the beat of my own drum. To never stop beating that drum.

I told my MP that for me, I’ve been born twice. That Tuesday in March of 1969 and the day I fully embraced being Autistic.  Diagnosis is a privilege, I told her. Self diagnosis is (for the most part) accepted within the Autistic communities. So it doesn’t have to be in a Doctors office that you have “that moment

But make no mistake, it’s indescribable except to each (Autistic) other. And then we barely have words to share with each other. It is more a knowing, a reason for the fire that burns within. It’s now the answer to that question I’ve been asked so many times…

How can you be so brave Patricia, how can you get through the things you do?

Because I am Autistic. It has taught me how. Having to go through over 4 decades trying to figure out where I  fit in gave me a depth of strength and resilience that got me this far. I’m home now. Not my planet, mind you 🙂

But at least I know I am truly not alone here anymore.

And that means everything.

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May
12

Day 132 – Spin, Spin, Spin

I hadn’t written a poem in a while and I’ve been really struggling with some things that I thought maybe I could help myself by trying this way to communicate it.

This is the longest and most personal poem I’ve ever written. And yet, unlike me, I want to share it! I even made a video to go along with it. That’s at the end of the poem.

So presenting:

Spin, Spin, Spin

When I was a child I would
spin, spin, spin
until my stomach became a hurricane.

Then without warning I’d stop,
and watch in dizzying fascination
as a distorted world skipped by.

“Hold on Patricia, hold on” I whispered

as I waited those few exhilarating,
terrifying, electrifying seconds
until the storm I created turned direction,
and my insides sloshed
like a drunken sailor on leave
with his few rations and a desperate need
to rid himself of what he’s seen.

My Grandmother would break the spell..

“Patricia!”

Where…is…she.

Head spinning.
Eyes, tracking wildly.
No, that’s a chair.

“How many times have I…”

The question lingers as I
duck and dive the answer.

It’s for naught.
Without fail I’d hear the story of
someone she knew who
lost an eye doing that.

But she knew
deep down inside
why I craved that storm.
I needed it to put out the fire.
To buy some breathing room.

I drank vinegar,
too.

“Your blood will thin out” Nanny said.

So it must.be.true.

Finally I spun my storm
a bit too far out to sea.
Down I tumbled and
landed in a crumpled heap.

Stopped by the edge of the coffee table.
Eye missed by…barely.
Yet another fable to add to the pile.
A scar shone from there for a very long time.
I have many of them, scars,
both out, and inside.

In desperation and in vain
I found more dangerous ways
to spin my storms.

Until one day –
An electrical storm,
unlike anything I’d ever seen.
For 50 minutes it ravaged my brain
and made my body shake.
I was barely a match for this one.
I accepted my certain fate.

But I came out the other side.
I heard music that no one else could hear
And it led me back.

It wasn’t a smooth landing.
I didn’t hear the announcement.
I was too busy chasing shadows
down the runway.

I’ve outrun myself now.
Looking back through a
set of eyes,
denied,
till I rode out the biggest storm.

But now I see
what I couldn’t make heads nor tails of
in my Grandmother’s living room.
Why the world buzzed and hummed
and made me press on my eyes
to block out the sun.

I spun till I made sense of it all.

But that didn’t make sense, to others
so I was told to hide.
And I went to depths a young mermaid
should never be
on her own.

and I saw things,
I shouldn’t see.

I’m not sure what this ocean is now,
that I am being tossed around in, is called.
Storm after storm —
I want out of this place.

But I can’t seem to figure out how, exactly.
Some attempts send me into stormier seas,
Some into calm places,
but those don’t last long anymore, it seems.

It shouldn’t be so hard
to let my freak flag fly
to just be me
to have my place to be free
and feel the wind on my wanting face
as I spin, spin, spin

©  Patricia George
All Rights Reserved
May 12, 2016

Day 132 of 366 Autistic Me 2016

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May
3

Day 124 – Happiness and Flappiness. The Gift of Books, Autism and Community

Hello Day 124!

About 4 years ago I went into the largest bookstore in the city and took my very first tentative steps into looking for books about Autism but more specifically by Autistic authors and hopefully some by Autistic women.

I left disappointed and empty handed.

The only Autistic who seemed “allowed” to write books to sell was Temple Grandin. I thought, “there has to be so many more of out there? where are we?

I found us online.

2 years ago I went back to the bookstore and it was marginally better but it was also worse. For the scant few books that were at least Autistic friendly were 5 more about diets and cures and strategies.

This time I pulled an employee and said, “this store needs to do better than these” and we had a great talk. Guess what? She told me she has always felt different.

We just seem to find each other when we turn our own lights on 🙂

Yesterday I got a message from a friend who is also Autistic. It was an inquiry for my mailing address. I wondered what he was sending me.

alexbooks_1_may3_16_gs5

Booksbooksbooksbooksbooks! There’s books in there! I love books! Happiness and flappiness!!

And I love that I was instructed to handle with care. Oh yes, I won’t even dog-ear a book.

Want to see what I got? I can hardly believe how fortunate I am to have these.

The Obsessive Joy of Autism by Juila Bascom

I saw this one first. Being orange it caught my eye but the name also jumped out at me too.

The Obsessive Joy of Autism is written by Julia Bascom with artwork by Elou Carrol. I have already read through it a few times.

it is a hug machine for my brain” Love!

⊕⊗⊕

Typed Words Loud Voices Edited by Amy Sequenzia and Elizabeth J. Grace

This was the next one I saw. I couldn’t believe I was holding it.

Typed Words Loud Voices Edited by Amy Sequenzia and Elizabeth J. Grace from Autonomous Press is something I have so wanted to read. I feel like I can’t really call myself an advocate without reading it. I need the education this book will bring.

⊕⊗⊕

The Real Experts: Readings for Parents of Autistic Children, edited by Michelle Sutton

The Real Experts: Readings for Parents of Autistic Children, edited by Michelle Sutton

I wish I was in this book, truth be told. I flip through and look at the names and recognise and respect so many of them. This is a very special, needed book. I am so proud to have it.

⊕⊗⊕

No You Don't. Essays from an Unstrange Mind by Sparrow Rose Jones.

No You Don’t: Essays from an Unstrange Mind by Sparrow Rose Jones (Portfolio Website)

I cried when this book touched my hands.

In the early days of my self acceptance and advocacy journey Sparrow told me some things that I’ve never forgotten and hold dear to my heart.  I have such respect and affection for Sparrow. I am grateful to have the opportunity to get to see her through her own words and learn more about the fabric of her life.

Sparrow also has a website called: Unstrange Mind.

⊕⊗⊕

And to round this amazing and thoughtful gift from my friend Alex, is this gem!

I Love Being My Own Autistic Self. A thAutoons Book by Landon Bryce

I Love Being My Own Autistic Self by Landon Bryce.

I’ve been following along on Landon’s Facebook page : The Autcast, for a few years now. I was so excited to see this book amongst such treasures. And I needed it because last night I had an entry mostly written and this a huge wave of self-doubt came over me and I shelved it.

Just reading the title of the book, I love being my own Autistic self…it’s a powerful mantra.

Here’s part of what I didn’t publish last night:

I know I am Autistic. I know it deep down in my bones. I recall the moment it washed over me. (I just got chills as I typed that) It was everything all at once and all at once it was everything.

In rapid fire — thing after memory after experience after every question I ever had – was answered.

Thank you so much Alex. I am grateful for your generosity but always more importantly, for your friendship.

I am so excited to read our stories. I hope one day that my book arrives as a gift to someone’s home and makes them this happy.

Please consider supporting all of these writers. All these books are for sale and I’ve linked to where you can get them. Thanks!

Day 124 of 366 – This is Autistic Me 2016

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