I akke the effort for you

  •  
  •  
  •  
  •  
  •  
  •  

* Cast Your Net *

This entry is dedicated to Stella Young. Through her Tedx talk I found my way to writing this entry, which is something I’ve wanted to do but just couldn’t let go of that last bit of fear.  Thank you Stella. Rest Peacefully ♥

 ⊕⊗⊕

Why has “this” ↓ not been named yet?

You are losing an online argument and the person makes a spelling or grammar mistake. You grab at the chance to take a swipe at your opponents intellect by pointing the spelling mistake out and….

YOU MAKE AN ERROR AS WELL.

The percentage of this happening must be darn impressive!

I don’t play those games because I’d always lose and in observing these exchanges of communication I’ve become acutely aware of how mean people can be about spelling and grammar.

A few years ago I found a really great article that deals with literacy privilege.  Literacy privilege?  I know, right? That uncomfortable feeling though is what we need to push past to have a better understand of the life of others.  And when I did that I found all sorts of great information and learned more about accommodation and how to strike a balance between myself and others.

Here’s the link to that article.↓

⊕ Literacy Privilege: How I Learned to Check Mine Instead of Making Fun of People’s Grammar on the Internet

I woke up today and worried about the fact I hadn’t written anything here in a while. It’s a lot of work and I have been especially drained. Ever since the EEG at the end of March I have been having Simple Partial Seizures.  I didn’t understand what they were for a few weeks and then when I did I went to see my family Doctor and things went from there. I’ll write about that experience in a separate entry.  They are under control now though, I should mention. Just under 2 weeks seizure free but it was daily, so much better.

(edited to add: had more seizures after the publishing of this article. As of June 29th, 2015 I have just over 3 weeks in. Really hoping this is the start of another long run of seizure free living.)

I’ve really come to understand that I have no control over my creative muse. Today’s turnaround from “what could I wrote about” to here is quick even for me 😀

I did something today on facebook, spontaneously. (and not) Not because I’ve thought about doing this many times and spontaneously because, well, that one is self explanatory!

There are several comorbid (occurs together but can occur separately) conditions on the Autism Spectrum. Mine started to be picked up fairly early, considering where I live and the information available. Epilepsy developed later in life, though I am seeing where the signs and some symptoms have been there for years.  The 2 I am going to write about today are Dyslexia and Dyspraxia.

The comorbid conditions to the Spectrum are really what cause most of it not all of the problems we have. This is where the struggle lies. This is why more and more “voices” of older Autistic adults like myself in the community are asking people to move past awareness and onto acceptance. Please!

So today I opened facebook and started typing about this issue and part way through I realised something. I wanted to finally show you a part of me that I go to great lengths to accommodate others for. I started to wonder, what if I allowed myself to be accommodated? What if I didn’t correct the visual effects of Dyslexia and Dyspraxia for others all the time? Would I still be understood? Made fun of? Will it lighten my load just enough to make my life just much easier? Only one way to find out.

Please know that I do not expect or am asking that my particular set of learning disabilities or issues be the only ones to be accommodated or the standard for anyone else. Some people cannot read words written without some attempt at correction or without punctuation because their brain doesn’t allow without tremendous effort, if at all. I’m no more deserving of accommodation than they are. I’ve just lived in such shame for so long about this and I don’t think I or others like me should any more.

Here’s we go…

Ive thought about doijg this fora vwert long time. Eahc time I do, or start I get too scared. Each tme I show who I rruly am it hurts me more than it jhelps me in teh outside world, so I keep it to myself.

(I’ve paused, this makes me fel such shame and I’;m tire dof feleinghame)

There are sevral co=morbif conditions on the Autism specturm and I have my share,. But teh 2 I’m hightling here are duyslexiua and dyspraxia.

Yes, this is ehat it looks like beofr eI make it so YOU can undrtsand me. Not only do I struggle throuhg this, I then have to corrct it all and hope i find most of it. This is what teh words that make you laught and cry look like before you read them.

Soetimes I dont; even know what I was trying to say.

Sme days tis is much worse and some days beter. This is a medium day.

On hard days I get angry and cry. I eranse it all and you never knwo wat I wanted to say. O hard sdya not only do i have toruble trpying, I have troreubel verbally communicating too.

Communicatiin is many, many things. It’s not just vernbal, or written and those who only acept those as lefitmate foems of summunication are harmign those of us who nees to communicate in other ways as well.

I works hours, sometimes days at the written thigns I share. You can;t see the effort I kae to reach YOU – so today U am givign you asmall poeek into my pecturm world.

Ironivally, those of us who have the most diffuculty with the norms of socirty works the hardest to accomidate those who don’t really needs it.

I want thyat to change.

If you think less of me after this, it’s a meansure of who youare as a persion, not me.

I’m mot correcvitn this – you figire it out – you expericne a small, small part of what it is like to be me.

 I akke the effort for you – can or will you make it for me?

(Facebook says yes! The amazing respone is why I decided to bring it outside of that platform to this one.  Thank you for your kindness!)

pgz_three_may17_15_gs5

 


* Cast Your Net *

  •  
  •  
  •  
  •  
  •  
  •  

Three

  •  
  •  
  •  
  •  
  •  
  •  

* Cast Your Net *

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 ]


* Cast Your Net *

  •  
  •  
  •  
  •  
  •  
  •