To Be Me – Autism Acceptance, Autistic Pride.

tobeme_poem_pic_finalI told my muse I wanted to create something special for International Autism Acceptance Day. At almost the last minute, she delivered with this piece called, “To Be Me”

This is a combination of my poetry and my (self) photography. I’m so visual that even though I write in such a way to create images in the readers head I still like the added layer of my photography to help that along.  So it’s a multi-media piece that I am very proud of – #AutisticPride (<— lots of us are proud, click and see!)

If you stick around any amount of time you’ll see how fond of circles and full circle moments I am.  I prefer to go on hikes that can be circular in nature as well as drives that don’t bring me back the same way I came, but back to the same point I started. ⊕

You’ll also see that I’m very fond of the number three!

So it made me chuckle then, to see my most recent EEG (Electroencephalographs) was literally on the 3rd Anniversary of the MRI I had after the seizures/coma/hospital stay. An EEG looks at what is happening in the brain – the activity of the brain cells. The MRI (Magnetic Resonance Imaging) uses a powerful magnetic field and radio frequency pulses. It was a deeper peek into my differently wired brain. A way to see what X-rays and CT Scans couldn’t.

I take anti-seizure medication (dilantin) and the levels have been getting lower for months and recently fallen below baseline – so I’m being sent to a new Neurologist. I’m excited about this. I intend to learn from and also teach this brain specialist.

This EEG was different in so many ways.  I’m sure I’ll keep uncovering more as I process it all and full circle moments collide into each other.

I has 29 electrodes glued to my head in various places, 2 more on my cheeks and 2 on my chest. The entire process which involved things like eyes open, eyes closed, deep breathing and strobing lights took about 2 hours.

eegwires_mar31_15_gs5

First of all, my memory loss from the seizures and coma meant I barely have any memory of the last time I did this test. I think that’s where a great deal of my fear came from — not having a script to go by.

The biggest change though besides the diagnoses of Status Epilepsy just over 3 years ago?

The confirmation that I am also Autistic, correcting something I always knew wasn’t quite right — a 25 year old incorrect manic depression diagnosis.

I didn’t come into the words Autism or Autistic with the same fear that parents of young children seem to.  Even still, the early days of research after the Doctor in the Hospital first questioned the possibility made me walk away for 3 more months. I couldn’t deal with Epilepsy + Autism and my physical recovery from the Hospital stay as well as personal events all at the same time.

There’s no way to come online and research Autism and not run into Autism Speaks. It’s now 10 years old (see how we took over their #AutismSpeaks10 tag on twitter!)  Having a strong sense of justice is a hallmark of many an Autistic brain and fortunately I saw the ugly side of this organization that collects millions under our neurology using fear and dehumanizing language.

They use language like “crisis” and “missing” to describe us. Autism Speaks, who most parents come to when their child is first diagnosed, tell them things like their Autistic child will destroy their marriage, drain their life savings, bankrupt them. They read that they’ll never have a real family vacation, that their other children suffer as a result.

Suffer. Damaged. Broken. Missing. Crisis.

That is how the organization that represents the neurology of millions of us, describes  us. Sometimes on giant billboards for millions to see on their daily commute. Just stop for a moment – truly stop and let that sink in.

This hurts more than you can ever imagine.  You think we can’t hear you? You think we don’t know?  You think non-verbal means “low functioning” or “severe” (more dehumanising language) and therefore not able to understand?

No, it doesn’t. You are wrong. We do understand.  It’s heartbreaking.

But I am a champion of the underdog – one of the MANY gifts of being Autistic – we have a sense of fairness and justice and humanity that those with typically wired brains seem to lack. We have so much empathy that it could flood the earth when it’s turned on. Part of why we shut down sometimes, that much empathy is overwhelming. So I’m using the gifts of my differently wired brain to speak here today about moving past the Autism Awareness model and damage of Autism Speak$ and onto Autism Acceptance. The awareness model keeps us stuck – under this banner all that happens is begging for money which Autism Speaks barely uses to help us.  It’s shameful and should be criminal really. They take money to help find ways to eradicate us, from scared people, or people who think they’re helping in the “fight against Autism.”

Fighting Autism? Why would you do that? This isn’t a disease, it’s a difference in brain wiring. Stop fighting me!

The journey of the last 3 years that has taken me into the world of Epilepsy and move past the manic depression dx and into embracing my Autistic brain has been one of acceptance.  Yes, of course awareness plays a part but awareness is step one and step 2 doesn’t occur until acceptance happens, for ourselves and for others.

Here’s what else #AccpetanceIs

When I am able to fully embrace and work within the boundaries of my neurology, and that’s accepted, I am free, powerful, the very best Patricia I can be. I am a force of nature, a tireless advocate, a wellspring of love. You’d want me on your side, you really would.

But when I am stopped from that? I am weak, confused, angry, sad – the very least that Patricia can be – I don’t care about your side, my side – full of doubt and self loathing. I question my existence. I contemplate killing myself.

It was such a powerful moment when I started to stim during my EEG. The index finger of my left hand started it, then the right index finger, then a chorus of wiggling fingers and flexing wrists and I was home, I was safe. As the lights strobed faster and faster a few inches from my face, my fingers danced me through it. I wasn’t ashamed like in the past, or confused by it and ready to explain if needed – but it wasn’t.

I walked into the appointment and proudly said, “I’m Autistic and I need….

That’s Autism Acceptance — it brings its own awareness and on this day, one that means different things to those of us on the Autism Spectrum my deepest hope is you’ll join me in moving forward too. Humanity is not complete without us, not the other way around.

We aren’t missing, we’re right here, right beside you and always will be.

So let’s walk forward, together – #AutismAcceptance

I'm fascinated and deeply moved by the intrinsic timing of the universe. If I could paint it out, or draw it in a pattern it would be like the waterways of the planet - all connected,  one moment leading into the next moment. It's a giant set of cogs that I can hear when it clicks together. The earth has its own heartbeat, you just have to listen in a way that isn't just all about the ears. Along this journey  I've had many extraordinary moments that others don't get to see, or maybe they can't, or won't.  It's the intrinsic timing, a spiral dance of good and bad.  It's rounding a corner to go camping one weekend just in time to see an eagle fishing and standing in awe of the dance I was privileged to see so far back in the woods while standing in a lake.    I can see, taste, hear and feel things that many others can't.  This leaves me blind to many of the ways people interact. It's only a deficit when exploited.  I'm simply a different way of looking at things and I'm so grateful to finally understand and have a name for the special way I see and experience this world.                                       My name is Patricia and I'm Autistic.

I’m fascinated and deeply moved by the intrinsic timing of the universe.
If I could paint it out, or draw it in a pattern it would be like the waterways of the planet – all connected,
one moment leading into the next moment. It’s a giant set of cogs that I can hear when it clicks together.
The earth has its own heartbeat, you just have to listen in a way that isn’t just all about the ears.
Along this journey I’ve had many extraordinary moments that others don’t get to see, or maybe they can’t, or won’t.
It’s the intrinsic timing, a spiral dance of good and bad.
It’s rounding a corner to go camping one weekend just in time to see an eagle fishing and standing in awe
of the dance I was privileged to see so far back in the woods while standing in a lake.
I can see, taste, hear and feel things that many others can’t.
This leaves me blind to many of the ways people interact.
It’s only a deficit when exploited.
I’m simply a different way of looking at things and I’m so
grateful to finally understand and have a name for the
special way I see and experience this world.
My name is Patricia and I’m Autistic.

Unencumbered Forgiveness

I’ve not gotten to walk unencumbered on bare ground for over 2 months now and neither have my dogs. That’s 2 months of not being able to physically “ground” myself. I was long past due.

So, I thought, what can I do about this?

And then it hit me, silly Pisces girl – go to the sea dear one, go to the sea.

electricocean

So Alice, Chloe and I did just that.

But before we got there I needed to make a stop – I needed a memory card for my beloved Pentax. I bought the wrong kind before, but that turned out to be the Universe guiding me, I just hadn’t see it yet.

Oh yes, those full circle moments I love so much, even when they hurt.

I was headed to Walmart — pocketbook, distance and time dictated it but my heart was screaming – “go to the Superstore” and so that’s where the car pulled into. I bought a card, far more expensive then I needed to spend. I walked to the car and my head should have been on the task at hand but I wondered, “why did I come here?

Charlie – that’s why.

Got your crew with you too” said a totally unassuming 65+ year old bearded man, and he gestured to the back of his car and then to mine.

Dogs – the beginning of many a conversation in my life.

We talked for over a half hour. That’s how it works with me. Hundreds pass by unnoticed till I find the people I need to and they find me too – it’s one of the best things about being Autistic and having the mind I do. I live in a very special world that exists within yours and you can’t see – but I can.

We spoke of many things as like minded spirits do. Good things, like dogs and farming and simpler lives and bad things. He told me he is dying of cancer, and I could see it even before he told me. I could hear it, smell it, taste it. He eyes filled with tears as he said the words. I turned to get my camera bag, taking the distraction as a way to make sure I got this right.

there’s nothing can be done to fight it” he said

but you’ve not given up” I stated,

no

I pointed up the hill to the Hospital I was in 3 years ago, told him what I fought back from. 50% chance of waking up and a 25% chance of being able to live any sort of productive life.

Believe” I told him. ( Be Live )

alice_hatter

Just before we parted ways I told him something very personal about my self and the situation I am in and he said,

You cannot give forgiveness, without accepting it first

And that’sexactly why I pulled into the parking lot, that’s it exactly – to hear that.

I put my hand on his shoulder before I left, not something I would normally do. I don’t touch people because I don’t like being touched. But I needed my energy to touch his in this way, for him to know just how much this encounter meant. That I heard him.

He was so warm to the touch – the deepest blue I ever seen.

Then my pups and I headed to the beach.

We walked unencumbered on sand as solid as ground. We let the salt air smudge away the winter. We breathed it in until we felt okay again. I let that ↓ idea roll around and around in my head and heart.

You cannot give forgiveness, without accepting it first

These full circle moments are breathtaking. I feel truly sorry for those who can’t see them or experience them – life is so much more than you are seeing in front of you – you have no idea.

But I can help with that through my words and experiences and sharing them in various ways.  Don’t be afraid of the words I use to describe and decipher myself. Let me truly embrace them because when I do I can share in ways like I am now and you get to see places you might never see, like in my pictures (4) below ↓ from the first Spring Beach walk of many for 2015!

If you click on each picture it open in a new tab and I think you can even comment on them?!

Blessed Be!

All Rights Reserved

 

Alice March 25th 2015

My Alice by her beloved Ocean a deep love we share

My Chloe  The woods are more her style but she's happy to run free!

My Chloe
The woods are more her style but she’s happy to run free!

Water meets sand and creates music for those listening

Water meets sand and creates music for those listening

 

Three

People like to celebrate firsts.

First birthday, anniversary. First time we are kissed, first time we get our heart-broken. We use these firsts as emotional markers in our histories. They act as signposts. A place to look up from, a place to look down on.

I do things a bit differently though. I always have.

Walks to the beat of her own drum” was often said.

My Grandmother declared me a special type of stubborn.

Indeed I was. Am.

I was born on a Tuesday (Tuesdays child is full of grace. It’s Tuesday today! Full circle ) in March of 1969, which is the 3rd month and I’m not sure if this is the reason for my deep and abiding love of the number 3 – but I am more likely to take note of threes and use them as guides. Or maybe it’s because of something I read one time,

Three is the first odd prime number

A first I could get behind. The first to not following along, the first to be different, odd.

I have always known I was different. Not simply in the way that all humans are different from one another. But in how my senses and my brain seemed to be at some sort of odds, there was always an inner turmoil which would come screaming out, literally. And I just saw things,,,differently.

I was potty trained and walking by 10 months. I would scream and thrash continuously with clothes and diapers on. So the people in my life adapted and I went naked a lot in the safety of my Grandparents home. I never crawled, I still can’t. I can’t jump either. Or snap my fingers.

At 18 months my Grandmother in an attempt to stop my over the top sensory seeking behaviours gave me an empty vicks container to try to satisfy my unrelenting need to smell and taste the vicks.  I was obsessed with it. Dangerously obsessed. So trying to work with my ever-increasing different ways of acting, she tried compromise. An empty container and on a shelf far out of the reach of a “normal” child the one she needed for colds. She tightened it. A grown women versus 18 month old me.

Who do you think won?

She found me in the crib the full container, emptied. I had eaten the entire greasy contents. I know why I did it. Vicks is an obsession that took me 20 years after that to get some control over.

Rushed to the hospital. I had to have my stomach pumped. I always loved that story. My Grandmother, not so much. Wait till I tell you the lengths she went to so I stopped obsessively seeking out vinegar to drink!

                                                      ⊕⊗⊕

As I write this I am perched between the worlds of the third anniversary of my 2nd and 3rd seizure. The 3rd one was the deal breaker. My three. It always comes back to three. And so that’s why I am choosing today to launch my website and say, “I’m here!

You have to go through one and two though, to get to three. And so…

1 – Monday December 12th, 2011 – after 17 hours of relentless vomiting I had my 1st seizure.

2 – Thursday January 12th, 2012 – I had my 2nd seizure at At 11:42pm. (look at those 2’s!!)

3 – Friday January 13th, 2012 – I had my 3rd seizure at 1:29am. The Doctor was bedside to witness it.

(clicking picture below will open the full-sized version to make it easier to read) ↓

Highlights: 129am Doctor was at bedside. I sat up in bed and 'felt a hot flash' HR heart rate shot up to 147 sinus  I started having a tonic clinic seizure that lasted essentially 50 minutes despite Ativan, propofol, haldol and dilantin (by IV) Decided to paralyse and intubate Very difficult airway. 3 unsuccessful attempts made Anaesthesiologist called and was able to intubate by using different means. I finally stopped seizing, but only because I was placed in a coma.

Highlights from above, with my own notes added:
– 129am – Doctor was at bedside. I sat up in bed and said I ‘felt a hot flash’ Heart-rate shot up to 147 sinus.
– I started having a tonic clonic seizure that lasted essentially 50 minutes despite Ativan, propofol, haldol and dilantin (by IV)
– Doctor decided to paralyse and intubate. Meaning, I was being placed in a coma to try to let my brain cool down and stop seizing.
– Very difficult airway. 3 unsuccessful attempts made.( Because of my previous jaw operation it was complicated. They thought they broke my jaw getting the tube in)
anesthesiologist called and was able to intubate by using different means. (smaller tubes)
– I finally stopped seizing, but only because I was placed in a coma.

Of note: He wrote the report at 3:13am on the 13th about my 3rd seizure.

I was in the coma for 3 days. I had a 50% chance of ever waking up again and I only had a 25% chance of coming through with no damage at all. As I write this I have lost appropriately 30%+ of all of my memories.

I died for a period of time while I was in the coma. I flatlined. My insulin decided to just disappear and running nurses and doctors and beeping machines happened while I went somewhere I always knew existed, though not understood like I do now. Even still, my understanding is dwarfed by the reality. I’m aware of that now though, which is a part of this life learning process. The part where we face our physical death but then move beyond that. Kinda heavy stuff.

From my journal – January 21, 2012

Determined to get out of there I started my fight back to full consciousness. But it was a fight. When I first woke up and for quite some time I had things backwards, words wrong, double vision and a host of other little things. The Nurse would give me a small drink of water to see if I could swallow and tell me to swallow and I’d spit it out. I had seemingly lost half of my vocabulary as well, though some of my words substitutions were kinda funny.

(clicking picture below will open the full-sized version)

I hope it is not too upsetting for those who care about me to see these pictures. Remember, this was 3 years ago and I made it!

When I heard the words “Status Epileptics” I didn’t know if it was my scrambled brain or just what a mouthful it is, but I didn’t really comprehend how big what had happened to me was. I knew it was going to take me places that I needed to go. I knew I was terrified but I was also anxious to get going. I went through a lot to get that far, I did not want to stop or be stopped.

I feel sorry for that Patricia. She only exists as a place so deep within me now that no one will ever, ever see her again. She had pure, unconditional love in her heart. She was new-born. She was talked back from leaving, no sung back from leaving by a sound I will never be able to explain. It is a song only for me I believe now. It has gotten me through things worse than that 50 minute seizure – since then. It will let me know when it is time to move on.

And something else which is quite remarkable.  I have *always* known I would develop Epilepsy. There are people who can confirm this. (Dr. Penfield, I smell Burnt Toast)

Despite the sometimes simply unbelievable events to happen even after the harrowing journey to being diagnosed as having Epilepsy, in the midst of it all was an answer I had been searching for my entire life. It came first as a simple, yet life changing question from the Doctor who had helped save my life,

Have you ever been diagnosed as on the Spectrum?” That was Monday January 16th, 2012.

More words between us followed, but they are the most important ones.

Monday January 30th 2012 and a Neurologist tells me officially I have a serious form of Epilepsy. He doesn’t care how or why. He cares that the meds he gave me are working. Then, dismissed.

I care how and why but it is all too scary to take in for a few more months yet. It will take me about 4-6 months of exhaustive researching to let that question factor into the equation.

Have you ever been diagnosed as on the Spectrum?

The visual result of one of the tests done to determine the indication of autism spectrum traits prior to eventual diagnosis.  The long version of this test is part of the actual diagnostic process for many.  Look at my beautiful Autistic brain!!

The visual result of one of the tests done to determine the indication of autism spectrum traits prior to eventual diagnosis.
The long version of this test is part of the actual diagnostic process for many.
Look at my beautiful Autistic brain!
Click the picture to go to the website for the test.

It took finding out that Autism Spectrum Disorder is in my family both paternally and maternally and that dyslexia and sensory processing issues are a part of this Spectrum to make that spark grow. I was diagnosed as Dyslexic in Grade 10 and much earlier for severe Sensory processing issues. I had to wear special glasses for years. My limitations were many, though not respected if reconsigned.

I was also diagnosed with a few other things along the way. The most life impacting was Manic Depression. That was 1984. We now know that more commonly as bipolar. In 1986, I was diagnosed with an eating disorder that was later understood to be anorexia. In 1987 I was diagnosed with a type of traumatic anxiety disorder related to extreme and long-term abuse that became known as PTSD. I totally rebuffed any suggestion of depression. It took till 2013 for me to accept that diagnosis. This is all so common for young women who are different, like me. I am typical in my atypicalness.

When I finally let the key open the lock for me, it all came flooding in like nothing I ever experienced before, and I’ve had some pretty heady experiences. It couldn’t have happened without the seizures and the coma though. Heck of a way to get the answers. I do like to do it my way though.

The moment you accept on a level that is indescribable that you are Autistic when it comes after so much life lived in struggle and turmoil, it is like a tidal wave. And when that wave was finished washing over me and I stood there gloriously wet, it all made sense. Every bit of it.

Every.bit.

(some of you are nodding 🙂 )

And so that’s the point from which my online journey in my home here, “Echoes of Mermaids” at persnicketypatricia.ca begins. That intrinsic understanding that happens when we get a key to our universe on a cellular level.

In the coming weeks and years I plan to create a full, lasting but ever evolving picture of my Autistic journey. It will be in many forms of communication. Audio, visual, with poetry, art, in all the ways I know how to reach out from here. I want to become a resource but also stay in a state of learning. I want my need to advocate to finally be met with the confidence I need to do it. I want to take my experiences and use them not only to pave my journey forward, but to help make that journey more understandable for those on the Autism Spectrum who are just starting out.

I think Autistic adults are one of the greatest untapped resources there are in the world. I’m here to stake my place.

My name is Patricia, and I’m Autistic 🙂 Welcome. Namaste.

I'm fascinated and deeply moved by the intrinsic timing of the universe. If I could paint it out, or draw it in a pattern it would be like the waterways of the planet - all connected,  one moment leading into the next moment. It's a giant set of cogs that I can hear when it clicks together. The earth has its own heartbeat, you just have to listen in a way that isn't just all about the ears. Along this journey  I've had many extraordinary moments that others don't get to see, or maybe they can't, or won't.  It's the intrinsic timing, a spiral dance of good and bad.  It's rounding a corner to go camping one weekend just in time to see an eagle fishing and standing in awe of the dance I was privileged to see so far back in the woods while standing in a lake.    I can see, taste, hear and feel things that many others can't.  This leaves me blind to many of the ways people interact. It's only a deficit when exploited.  I'm simply a different way of looking at things and I'm so grateful to finally understand and have a name for the special way I see and experience this world.                                       My name is Patricia and I'm Autistic.

I’m fascinated and deeply moved by the intrinsic timing of the universe.
If I could paint it out, or draw it in a pattern it would be like the waterways of the planet – all connected,
one moment leading into the next moment. It’s a giant set of cogs that I can hear when it clicks together.
The earth has its own heartbeat, you just have to listen in a way that isn’t just all about the ears.
Along this journey I’ve had many extraordinary moments that others don’t get to see, or maybe they can’t, or won’t.
It’s the intrinsic timing, a spiral dance of good and bad.
It’s rounding a corner to go camping one weekend just in time to see an eagle fishing and standing in awe
of the dance I was privileged to see so far back in the woods while standing in a lake.
I can see, taste, hear and feel things that many others can’t.
This leaves me blind to many of the ways people interact.
It’s only a deficit when exploited.
I’m simply a different way of looking at things and I’m so
grateful to finally understand and have a name for the
special way I see and experience this world.
My name is Patricia and I’m Autistic.

Coming up next?! I share my artwork for the first time, which is the inspiration for the name of the website, Echoes of Mermaids. It’s going to be a pretty big “first” for me. I’m nervous and excited.

Thanks to: The Thinking Persons Guide to Autism for their Signal Boost for this entry. Eternally grateful.

Until then.

[ Contact Page Here ] [ About Me page Here ]