Prepare to enter the wild and wooly world of an adult with Aspergers Syndrome, a form of autism characterized by intellignce, quirks, social difficulties and downright strange and oddish behaviours.

People with Aspergers generally are high functioning in everyday life but have great difficulty connecting with others due to the inability to read faces, body language and subtle verbal clues. They also tend to take words literally and have a hard time multi-tasking.

Oversensitivity to touch (clothing has to be soft and often the tags removed), light (do not leave home without the sunglasses), sound (loud noises and noisey places are avoided), taste (many Aspies have quite a limited diet and are frequently very picky eaters) and smells makes the everyday existence more of a challenge.

Fasten your seatbelts and come on in...
To find out more about what Aspergers is..please check out my earliest blog entries

Wednesday, April 30, 2014

Thunderstruck

Driving along, I suddenly realized, with great emotion, that I don't need to believe what everyone tells me. To save myself, I'd just automatically agree with my perpetrator, teachers, anyone, because everyone knew better than me and I didn't want to get in trouble.
 I never bothered to think for myself, to wish or hope for anything better than my miserable every day experiences. 
 I fully believed that the rest of my life would be exactly like my childhood days. I resigned myself to just make the best of it and pray for an early death.
 I was a total puppet. Someone else continually pulling my strings. I said what they wanted, did what they wanted, felt how they told me to feel...and I thought the way they wanted me to.
 How do you become real, turn into a person, with ones own heart, mind and soul after years spent being the speck of dust being blown by someone else's breath?
 How does one learn to begin to be?
I always know my big truths because I well up all emotional. It's like the green light that says go, you are on to something important here.
 Guess I should grow some legs and touch the ground.

 Hmmm, methinks freedom be nearer. 

Tuesday, April 29, 2014

Freedom...within reach?

Honestly, I don't know what I would do if I was free. I've never experienced said feeling. It's kinda scary to think about. Changing.
 It's as if my wrists are shackled at my waist. And freedom hovers directly in front of me, like a trophy...or a treasure box...or Pandoras box...
 All I need do, is release the shackles (I can do it. It's within my control.) and reach out, just a foot or two directly in front of me. But it could be a mile away. Out of reach. The distance between me and freedom...is the chasm of years of being belittled, used, forbidden from thinking or feeling for myself.


 I'm unsure, unsteady, having never really reached out...for anything. I'm used to my hands at my sides, disabled, crunched against me, held back, manipulated, taught that I was useless, that my arms weren't really mine to do with as I pleased. My hands made to touch things I didn't want to touch. Fingers made to go places fingers werent meant to go.  So much disgust, foul, made to dos, forces and being forced. My arms were never mine to move and do as I pleased, my hands, and the rest of me.
Oh, I feel such atrembling of struggle, everywhere. I've worn this strait jacket so long, it's turned into security, or rather, the monster I'm familiar with. Like I've lived within these four walls of peeling, weeping plaster and paint. It's all I have known. Gotten used to it. Hard to think about leaving a familiar, well-aged state of mind. Don't know if I can do it. Don't know whats out there. It's hard...jumping off the familiar, crumbling building into the open, unknown air.
Just thinking out loud. Not sure I'd know what to do if I felt freedom....like walking onto an alien planet......



Monday, April 28, 2014

Emotional Freedom from a Childhood Gone Bad




I'm trying to figure out a number of things. 1) To think for myself. I spent my childhood trying to avoid getting beat and molested so I kept my mouth shut and was a very agreeable, don't rock the boat kind of kid.
 2) Working on building some sort of stable foundation of self. My earliest memories all involved my dad molesting me and mom drowning me. I've never had a base, a foundation, legs to stand on. Trying to connect to this world is challenging as I spent most of my time dissociating and avoiding pain. There was no one to trust, no one to lean on or care for me. It's tough to learn to rely and love yourself without any experience.
3) Figuring out who I am minus constant fear and anxiety. F and A take up a huge part of my psyche. The younger, stuck parts of me still live with what they were taught and felt. All people hurt. Life is about trying to leave my body, dissociate, and constant hyper vigilance. I've got to convince my parts that the past is over. A lot of my parts are going to be lost, lose their jobs and sole functions if we figure out the world is safe and it's safe to be in the body.
4) How empty and confused will I be if all the fear left? What is something positive to fill such gaping voids? Fear and pain was all I knew as a child...yeah, trying breaking childhood engrained patterns. It's a job and a half. So much is involved...hard to accurately portray how much fear engulfed my every waking, sleeping moments for days and weeks on end.
5) Lots of work to continue doing.
6) Dealing with the sensations from these increasing flashbacks, such weirdie physical and emotional sensations to try and identify and place appropriately.
Arrrggghhh. I'm incredibly strong and resiliant. I an do this. It's a ton of work but I was born with a smart brain and a desire to heal.
 Processing therapy today should take me all week till the next appointment. Its like my job. The pay isn't great but the benefits from the out coming are phenom!
 Thanks for reading.
Have a peaceful night.

Therapy Today

Continually surprised at how much gets aired in a single therapy session. I tend to leave both confused, enlightened, and with a lot of baggage to sort through.


- Posted using BlogPress from my iPad

What I Believe

It's a rarity for me to so publicly state what I believe. Most of my life I have been to scared to disagree with people, so I just agreed with them. Enough. My blog. My format. My beliefs. My spiritual beliefs are part of who I am. No negative comments allowed. They will be deleted. Let me speak my peace. Allow me to state who I am, how I think and what I believe.


 I believe that everyone goes to heaven. We are on this Earth to experience and find out what we are made of. We all have the right to leave whenever we want. Choice is always ours. I judge no one. We live and die for only ourselves. Life is a solo experience, for who can really understand or begin to comprehend what another has been through, thinks and feels. I respect everyone else faith or lack of it. There is no one way to heaven. All end up there.
 We are born. We live and complete out current life. We move on to the next phase, afterlife. We hang out there for a short or long time. Then we come back and live this physical world again. It's a cycle, a constantly repeating cycle. I think we put too much attention and value and energy singularly into this current waking life. We fear death, when in reality, there is nothing to fear. It's just another stage, a different arena and we have all been there before. Otherwise..where do we come from? Where are we before we are born?
 Our physical lives are very finite. We all will die. It's okay to be aware of it and talk about it.
 These statements feel very right to me. And I respect others views. Each person believes the things that are right for them.


 I've just recently started thinking that there is a purgatory, a waiting place before heaven. Purgatory is self-imposed. It's for people that don't feel worthy, don't believe they are dead, don't believe in heaven or any God. People choose purgatory until they forgive themselves, until they are ready to move on.
 Earth is our physical experiences with a minor in spirit. Heaven is our spiritual experience and recuperation place.
 That's just what I think, feel and believe. I fully respect each individuals beliefs.

The answers reside within....really?




- Posted using BlogPress from my iPad

Saturday, April 26, 2014

Lyme Full Strength Antiotics x2 Day 1


Today is my first day on full strength doxy, 100 mg x2 and my new antibiotic 1/2 strength. I can't tell if I'm killing bacteria or have a cold. I feel awful and can barely move. I've slept the majority of the day and managed to get enough fluids and food and take my supplements. I'm not complaining, just stating. I really need to work on keeping track of meds and symptoms.
 The first day I am well, I will travel 30 miles away and go thrift store shopping! I've been thinking of things to do that make me happy. When I am well enough, I'm going to take more time to "smell the roses", lighten up, forget I'm chronicly sick and do things I enjoy:)
 It's Spring and I'm going to get out into the sunshine as much as possible!
Enjoy your day!

Friday, April 25, 2014

I am the poster child...Ask me about it! We can talk!


**

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Yeah, sometimes I think my life is ridiculous.
An attempt at humor regarding the subjects I am a quasi-expert on.
But seriously, I am happy to answer any and all questions or if you just want to talk:)

Thursday, April 24, 2014

Eric, I tried to help but I failed you

The school system failed you. I remember when you were this little boy in school with my son. You caught my eye. You were different from all the other kids. You reminded me...of me. Your beautiful eyes often haunted, empty. I could see your pain. I don't know who was hurting you or how, but I knew someone was being very cruel to you.
 You were the first abused kid I spoke out for. At recess, amongst flying basketballs and kids shouting your name, you stood there, dissociate, blank and very far away. 
 I was so sure. I mustered huge courage and sat down with the school administrator. I said "Eric needs help. I think he is being abused." I made my case, reporting all the signs and symptoms. I dont know if the school ever investigated or called protective services.
Maybe that's a call I should have made. I didn't know what else to do.
 After that, every time I saw him, I would smile, say hi and pat his shoulder. I wanted him to know I cared.
 Eric killed himself in prison yesterday. He had murdered a police officer and had recently been sentenced to life. Every time I saw his face, those eyes, on tv, something was familiar, I just didn't know what. 
 Now I know.
I knew something very bad was happening to Eric. I did my best to try and get help. I didn't do enough. I failed this innocent young boy. His parents/ guardians failed him. The teachers, administrators and bystanders who knew he was being hurt, failed him.
 For Gods sake, call child protective services if you suspect a child is being hurt. 
 A police officer lost his life. Eric's son will never know his dad. 
 Child Abuse Kills
  Do Something
Say Something
In memory of Eric. May you rest in peace. No one can hurt you anymore.

Learning about Living with Lyme Disease...Know Thine Enemy

I've spent hours researching; I've spoken to someone else with chronic Lyme and I've learned a few things.


 You cannot fight what you do not know.
 1) Lyme is an inflammatory, complex, bacterial disease.
2) It chiefly affects the skin, muscles, nervous system, brain and heart, vision, joints.
3) The bacteria is named Borrelia burgdorferi, otherwise known as Bb.
4) Bb lives in three forms, spirochete, L form and cyst
5) In cyst form, antibiotics are ineffective. The Bb is dormant.
6) The spirochete has a very long generation time, at least 12-24 hours and it has periods of dormancy.
7) It takes 48 to 72 hours of therapy to initiate bacterial killing.
8) Treatment is highly individual. Each person must find the protocol that works for them and continue it for three years, if not longer.
9) As the bacteria start dying off, Bb releases neurotoxin. The individual suffers a herx reaction, bad flu-like symptoms.
10) Three ways Lyme treatment will fail. 1 Non compliance 2 Not enough sleep 3 Exercise
11) Detox is absolutely necessary. There are various effective ways to detox. Some are: dandelion and milk thistle tea, alka seltzer Gold ( only the gold variety), Glutathione supplement, activated charcoal, water with lemon, lots of water, etc.
12) Acupuncture can help. It strengthens the body's immunity and helps with detox and bacterial die off.
13) Listen to your body. Rest when you are tired. Don't force yourself to eat, sometimes digestion is a lot of work. Eat when hungry.
14) Probiotics are always helpful when on antibiotics.
That's what I've learned in the past few days. The research continues.
I attended Physical Therapy today and boy do I hurt. Any physical movement seems to piss off the Bb. But it's necessary to stay moving and try and get some strength back.
Spent last week in therapy just whining, griping and venting about Bb. Tomorrow I see my doctor to look at my current regiment.
Pretty pleased I manged to get a lot done today:)

Tuesday, April 22, 2014

The Two Types of Feeling Safe, Abuse Survivors, *Trigger Alert* I'm telling it like it is *Honesty Alert* Raw & Unfiltered

I've established that there are two distinct, very seperate feelings of being safe that I am actively working on.


 One, the feeling that no one, no person, is out to harm or hurt me on purpose. I am without fear in public places where there are a few to dozens of people, stores, libraries and such, unless I am isolated with only another person present. Overall, public places are fine. Need to work on ingraining the thought that I am relatively always safe from harm in this contex.
 Secondly, and this is proving to be the more difficult of the two, I am safe within my own body. Sounds simple, doesn't it? But no. I'm really good at dissociating, in a sense leaving my external, physical body and hiding in my head, if that makes sense. It's an MPD/ DID thingy. As you have probably guessed, my physical body was a torturous, painful place to be. Whether it was the neglect of hunger, warmth and affection, sexual or physical abuse, being in my body, feeling my physicality, was not pleasant and I avoided it at all costs.
 Okay, so now that I am free from harm, it's safe to dwell in my physical self. Nope, as I am more within my body, there are....quite a few body memories of the torture and nefarious And quite painful nature. Staying in my body, I run up against these physical memories that have been stored there and hidden. Picture walking into a thirty year old dusty, smelly warehouse filled with tightly compacted boxes that have the potential to ooze or explode if you get too near. That, that is my reality. I need, I choose to walk into this warehouse of half broke boxes.
 It sure isn't nice, pleasant or how I would like to spend my days...but standing within this warehouse, in all these ill fitting boxes of glass, wood and steel...these are all parts/ memories of Mine. Yeah, they may be painful, smell bad and scare the shit out of me, but...these are all real, true things that actually happened to me and they were too overwhelming to deal with at the time.


 Hand me the crowbar, Alice.
 It's so hard to quantify, to accurately portray how terrified and painful even a single day of my pre-10 life was.  It wasn't necessarily a single small or big traumatic event...sigh, cry....it was more like an ongoing saga of one painful experience after another. Talk about stressful and scared. Damn.
 Worried if there would be breakfast, searching hoping to find clean underwear and socks, is there food in my sack lunch? Money for milk? Will the other kids make fun of my clothes or my lunch, did I have time to do homework or did I have to clean house, can i stay awake, dad had me up for an hour in the middle of the night, trying not to dissociate/ switch too much in class or I won't know what subject we are on, I hope the teacher doesn't call on me, recess time, I'll just walk over to the swings and hide, lunch time watching everyone else eating good stuff (I actually stole a kids lunch once..I was just that hungry), walking home from school with siblings, taking my time as it was the only real respite I had, home to mom and taking care of baby brothers and sisters, cooking dinner, wait till your father gets home, trying to judge his mood as he walks in the door, fear rose and prickled when he was around, never knowing when he'd explode slap, hit, grab...never felt safe for a moment, maybe bath time, going to bed, if I was lucky I slept with a sister or two, hmm sleeping is a dirty word, didn't get to sleep much just laying in bed waiting, wondering if dad would come get me again, where he would drag me, what did he have in mind to do, how would I play it, be complacent as possible, back to bed, sleep a few hours, do it all over again.
 It felt like one long,drawn out anxiety attack with brief intermissions. I was just waiting, preparing for the next crime. Like clockwork, taxes and death, I knew I'd be blindsided and smacked and I kew he would sexually abuse me. It was just part of my daily life...starving, cold, invisible, hiding, raped, pretend nothing happened, underlying dread, fear and panic.
 Yeah. That pretty much sums it up.


 But I am safe now. No one is trying to hurt me. My dad died last year. He can't hurt me anymore. Did you know a flashback is where it feels like the event, a single act of egregious pain or molestation is happening in real time, right now? Like, something that happened way back when I was nine, say, my dad burned me witha cigarette...see, that memory overwhelmed my little brain so I boxed it up and put it away in the warehouse. Having a flashback of that event means it feels like there is a lit cigarette being put out on my chest. In a flashback I see it, can smell it and often hear things that are being said. Compartmentalizing to the max.
 One of my fb friends Jack, said it best "therapy is hard but I keep doing it". Jack rocks.
 I don't know. It's been so challenging lately. In trying to explain some of my hell, I guess I'm hoping more people can comprehend and appreciate what I actually lived through and continue to work through.
 It's hard but I keep doing it.
You gotta have a ton of respect and give credit to the child abuse survivors...you really do. These perfectly innocent beautiful little kids that got raped, beat, neglected and lived through it. How incredibly strong...a life with such little ease. Some times every day, every hour is a struggle.
Fighting the good fight.
keep thinking I'm gonna end this post but it keeps moving on....
You know, I really rarely ever give myself any credit. Hell, half the time I'm looking at it, the past, like it happened to someone else. DID rocks! And sometimes...it's just really really hard to believe that anyone, Anyone sick, twisted, fucked, mentally ill, drugged out of their mind, I don't care...that anyone could ever ever ever rape or hurt a child. It just goes against every fiber of my being to think that such a criminal, heinous, travesty could ever ever happen Even once, much less multiple times in a week. My God, where is the humanity? Who can even think such things much less actually perpetrate them? Mighty fucking sad. Completely illogical and lack even a single shred of common decency. It don't seem right.
And then, get this shit, umm, the victim, the abused child is the one who suffers, feels bad and takes the blame and lives with the ramifications of what the "all-knowing" responsible adult does. Adults fucking up children's bodies, heads, minds and lives And They fucking Live without Guilt or punishment because the adult now, is terrified to talk about it! This is ass backward fucked, I'm sorry, it just is.
God, makes you wonder what kind of barbaric, cruel world we live in, doesn't it.


Anyway
I've had enough. I've spoken my peace for this night.
Thanks for reading, you strong, unswerving, unafraid of looking at my truth readers.
Thanks

Sunday, April 20, 2014

I Am Safe, No one is trying to hurt me

Boy, I really need to have a talk with my inner child...One of my biggest, semi constant fears is that people are out to hurt me. Not just a mere bump or a shove, but the feeling is that people sit around plotting and planning ways to nefariously inflict physical and emotional harm upon my person.
 I fully understand why such a thought is firmly entrenched. My everyday experiences for ten years deeply planted and reinforced these thinking patterns.


 Lately, I've been wondering, wow, what would it feel like to see the world and the majority of peoples as kind, benevolent, or at least neutral characters in this waking dream of mine?
 This fear of being hurt is like the white line down the middle of the road that I have automatically, religiously followed. I'm not sure how I'd find my bearings or know which direction to go in if I "removed the line", the thoughts.
 In truth, in this present day reality, mentality, I am quite safe. It being over twenty some, no, thirty some years since anyone actively hurt me, it really is safe to say that the coast is clear and there are no criminals hiding in the bushes.
 Boy, try and change a belief from your childhood, no simple task. Children are like sponges, absorbing their experiences deeply.
 Aspies, autistics are even more adept at generalizing painful experiences. Ergo, I slipped once on ice, therefore all ice is bad and to be avoided. Aspies never forget the pain of a fall, so avoid anything that even remotely appears slippery and slick.
 My reality was...only immediate family members harmed me. Wait a tick....let that sink in. It seems profound and largesse.
 Only members of my immediate, biological family harmed me. Mostly. There were a couple of...incidents in which harm involved my dad and one of his friends. But let's not nit pick. My family hurt me. Yet, I fear the majority of people. Hmm. Logically, that doesnt seem like a fair assumption.  And get this, my family is gone. They are not people I see or interact with personally. They live at least two hours away. Oh, methinks the wheels slowly turn and click into place. Otherwise known as the lightbulb going off over my head.
 It's not like I feel this fear in public places, grocery stores or school. I think mostly the fear shows itself when I am alone with another person I don't thoroughly know, or amongst a small or large group, by myself and with little knowledge of the others.
 No one is out to hurt me anymore, really. Such a small sentence with a huge meaning. Seriously, I have to recite this new "mantra" for days and weeks in order to displace, pry up, the old thought pattern and replace it with healthier thinking.
 Really, I am not lying to you, oh wise and wounded inner child....seriously, the only people that wounded were family And They Are gone and out of my life!


 Yup, it will take awhile.
 Nothing like a bit of thinking out loud to produce highly therapeutic, healthy results:)
Off to recite!
Be well
Thanks for reading:)

Saturday, April 19, 2014

Byline

She had always felt best
At night
At dark
Amongst no expectations
Only her will and whim
Light illuminates little that matters
Spirits can't soar
Under parental restraint
The give me, give me
Unspoken responsibilities
Rumors written in whispers
Swirl and ebb
Amongst her crown
Feet of clay
Needn't feel sand
To know they are real
Behind thick curtains
The other
The wanters
And needers
She laughs behind the veil
Walls of darkness conceal
Her true self,
How she honestly feels
Lost in the squinting, oppressive daylight
This incarnation
Exploring the degregation and pain
Of having flesh and bone
A spirit tormented
Plugged into
Traumatized physical beingness
Words fail
Intricacies, levels
Of discomfort, of pain
Of torment
Hiding behind the bookshelf
That couldn't stand the breeze
Of an open door
The perplexity of an open door
And not being able to walk out it
Barefoot, thorns sting
And mash into
Abrade and scar
But no one sees
Blood on the floor
All but ignored
Intermingled with maggots and dirt
If she could
Pull down the heavy clouds
And pour forth the rain
To the one who never knew clean
She could stand
In the living room
Soaking wet
And no one asked why
Or noticed anything strange
Amiss
Remiss
Invisible
Invalid
No one Else was Wet
So she was not
Her words evaporated
Into walls soaked in tears
Her screams stifled
By heavy hands
And pounding fists
Her fairy tale respite
It Was all in her head
You know the one
Coiled in wire barbed
And sharply tipped
Her hands always ached
Perennially empty
Longing
Wanting
Misbegotten
Speaking of woe
Naked
Afraid
Cowering
Under thin blankets
And tattered clothes
A waif
Orphan
Lying little bitch
Hatred
Daggers in every corner
Behind the curtain
Under bed and couch
She'd tear at her face
Her hair
Her feet
Trying to get out
Get away
Leave the pain
Don't let them catch her
Oh no
Not again
Always knowing
What would come next
With the angry, grasping fists
And the sharp words
From semi curled lips
Smirking smiles
Hiding lies
Betraying
Hurt
Ruby red lips
Upturned
Inflicting
STOP
And it Never Did
It never would
Crouched under the barrage
Her back took the blows
Her front dare not see
Or speak of
Smack
Down
Trembling fear
In every cell of her being
Like quakes, shivering
Convulsing
Please set me free
But the chains too heavy
No place to run
God why must the first ten years of her life
Haunt and torment her so?
I ask
Now, I dare ask
I see
Look back and see
The scars
And the beatings
As well
Kept them hidden
Couldn't see them
Back then
Couldn't fathom the depth
Of the injury
How they maimed and scarred her so
Emotionally, a forever weeping child
Crying out
For no one in particular
Just for help
From beings unnamed, unknown
Do you know what it's like
To stand crying and bleeding
Amidst those who "love you"
And none would come to aid?
I could reach out and touch them,
They were that physically close,
Yet I wasn't there,
My pain Invalid
Nonexistent
They said they were kin
But they were cruel
Legs that would not move
Feet that would not carry
Hands flapping
Open, cold, useless
Living in that pit
Of mayhem and filth
Human filth, emotional garbage
How they hurt me
Intentionally
With malice
And great joy
Tell me why I have yet to recover
From the stings, barbs, insults
All I wanted was a bite to eat,
Shoes on my feet
And a hand to hold on to
I spoke
But no one bothered to hear
I write
Because I can
Now
Tell the story
And be heard
It's an incredible tale
I rarely believe it
Myselves
How long must I bear this burden
They who witnessed will never see
It didn't happen in a vacuum
Or isolated alley
Much happened with blind witness present
Their own hands tied behind their backs
Ears covered
Lips welded shut
It's one thing to be beaten alone
Where no one can see
It's quite another
Act of humiliation and embarrassment
To be maligned in front of a "loving" crowd
They know what happened
Yet their tongues are tied
No longer mine
No longer mine






Friday, April 18, 2014

My Ex, Kenneth W. Zechlinski 1945-2014

 I thought I'd write a pleasant post about an earlier time in my life. And regarding a kind soul who is no longer in this world, Ken.
 I met Ken when I was 16 or 17 years old, while we were both working at the nursing home, Springbrook Manor on the Eastbeltine in Grand Rapids, Michigan. We worked at Station 3. I was a nurses aide and Ken was an LPN nurse.
 One of the first things that attracted me to Ken was his honesty, his caring and extreme, outrageous playfulness. As the LPN, he was in charge of running the team, making sure everyone did their assignments and all patients were taken care of. He did his job very well. I don't think a patient or aide ever had a complaint against him.
 One of the first one-on-ones I had with Ken...okay, this may sound bad but remember I was just a young, stupid teenager suddenly thrust into socializing with a rowdy bunch of equally young and stupid co-workers,...I asked him for Visine because another girl and I had been out on "break" smoking things we shouldn't have. Ken didn't judge me and he administered the drops with a gentle hand.
 It wasn't unusual for Ken to instigate and perpetuate all-out, buckets of water water fights at the desk after all the patients had been put to bed. Seriously, we had to mop up the floors and dry off the walls and patient charts after big water fights. There were also wheelchair races throughout the halls and out in the courtyard. Everyone had a good time. Ken was really easy to work with.
 At some point, he started giving me rides home. Somehow I ended up going to his apartment regularly. We would often cook pork chops or pork steaks, his favorite, in the electric skillet. It was a rather dumpy, basement apartment that he shared with another male nurse named Bill. The furniture was like, from the sixties or early seventies, I swear. I remember that small, old, rounded topped refrigerator and that smelly, bumpy old couch. His car, oh my, some big, old yellow thing with a brown top, had a dozen bumper stickers on its backside. He would always joke that the stickers were holding the car together, which wasn't far from the truth.
 As soon as I was able to finish high school, Ken and I moved to Kalamazoo to escape my family and start a life together. He taught me all about getting an apartment, paying bills, grocery shopping, getting a job. It was rough. We were dirt poor living paycheck to paycheck and always hoping the car didn't break down.
 We were each other's best and only friend, but it was okay because we very much enjoyed each other's company. We spent hours playing board games, chess, Sorry, Trouble, etc. Ken liked to invent board games of his own to play. I remember one that was like baseball played on a board. It was pretty fun.
 We also spent a lot of time fishing, especially when we left Kalamazoo and moved to Manistee to live and help out his mom. 
 Overall, those who knew him well, might say Ken was a sad person. I know he carried a good amount of grief. He and I talked about everything, so I understand he had much reason.
 Ken was placed for adoption. I can't remember at what age but it wasn't at birth. His biological mom kept his sisters. Ken often felt or often wondered why his mom kept sisters but gave away him.
 His adoptive mom was nice enough. He rarely spoke of his adoptive father who wasn't a nice man and died when Ken was still quite young.
  Ken went to nursing college in Muskegon and became an LPN. He seemed to enjoy working in nursing homes best. He was a great nurse.
 He also served in the Vietnam war and contracted PTSD in the process. He was a medic and saw things that tormented him. He also talked about being doused repeatedly with Agent Orange while in the jungle. After returning from Vietnam he was never really healthy again.
 He married and had two children, the light of his life. He divorced when they were early teens. His greatest sorrow was that he didn't get to spend as much time as he wanted for them and couldn't provide much financially. He always talked about his children with the greatest love. They meant the world to him.
  We did drive to pick up the kids for weekends. There was never enough time spent with them.
  Ken was a very caring person. He was loved animals and we always had at least one cat and dog, usually more. 
  We would listen to albums, Blondie, Rocky Horror Picture Show and Jesus Christ Superstar. He was fond of the Beatles and Creedance Clearwater Revival, too.
 We did so much for each other. We encouraged and supported one another. We married in Kalamazoo at a beautiful park.
 He built me a desktop easel so I could paint. He continually surprised me with gifts from an engagement ring we couldn't afford, to small bouquets of wildflowers. He was a true gentleman.
  Every now and then, we would scrape together enough money to drive to Chicago and go visit the Science and Industry museum. We even spent the night in a hotel and walked the city streets at night. It was wonderous.
 I remember playing Donkey Kong on a video game in the lobby with him. He and I loved playing games together. We really had a lot of fun. I recall so many fun times.
  Ken loved the Bible and going to church, even more so than I. We would try and find a church to belong to every time we moved. We must have moved 8-10 times, mostly around Kalamazoo and Manistee.
  I was sad to hear about his passing but relieved to know he was no longer wanting or in pain.
 I am so grateful to have had those..7-10 years (actual dates escape me as we lived together, married, divorced and lived together again). It was an amicable divorce. We were both going in different directions. 
 He and I were best friends and he truly helped my transition from my parents house to the outside world. So kind, caring, what a wonderful guy. I am grateful for his prescence in my life, for his wisdom, his support and love.
 May you truly rest in peace and happiness! Thank You!!!

Idle Midnight Thought

It's funny, the thoughts that arise when I lay down to go to sleep. Nighttime seems to bring clarity. My mind is allowed to run free.
 I was thinking...I've only ever had one close friend who didn't keep secrets or hide anything from me.
 I guess I'm stymied as to the reasons people hide things, the motives and all.
Hmm. Just a thought

Feeling Better:)

Whew, the last four weeks were an exhausting trial of wit, strength and stamina. Yesterday, I finally started feeling like my old self, tired, sore but functional. My best guess as to what was taking place within my body, was some type of Lyme flare-up, heavy bacterial die off (when the bacteria die off, they excrete a neurotoxin) resulting in me feeling positively putrid for those weeks. I firmly believe the acupuncture, along with the half-dozen supplements and medications I take, promoted my body to kill off a large amount of the Lyme.
 Lyme doesn't have a singular proven cure. It is a different series of medications and supplements for each individual. I'm working, along with my nurse practitioner, therapist and acupuncturist, to procure the appropriate treatment for me.
 One thing I'm learning is to trust my body and it's reactions. I'm learning to listen and monitor everything I ingest or each procedure I do, to find which ones work. It's an arduous, daily, all-day long process, but there is no other way to heal. And it's definitely time to look at how my body got so sick and learn how to build myself up. I'd say build it back up, but I've never really been in a healthy, calm state of being.
  Healing has to take in account, well, every aspect of my being. Emotionally, my therapist and I are examining the damaging thought patterns and stuck body memories. They are like enteric roadblocks. My nurse practitioner, my doc, is helping me learn about the bacteria and medications, including diet and alternative helpers. My acupuncturist is working with me to release the energetic blockages throughout my system, in addition to offering advice. I've got three very wise professionals on my team. Every one is working together with me in order to give me back my life.
 I sleep a ton. It's part of having the disease. I've had some interesting, even delightful and insightful dreams that offer me respite and clues.
 I spend hours, almost everyday, scanning the internet, reading and researching, learning more about what works, what doesn't, what to try and what to avoid. My new theme is "Know Thine Enemy". In learning about the bacteria and how it lives, it allows me to better access how to eradicat it.
 Let me tell you...Gratitude is big with me. I'm grateful when I can muster the mental and physical strength to just get out of bed. I think I've said it recently...I'm thoroughly amazed at the resolve and inner strength that I have found! I'm thrilled that I lived and dragged my sorry ass through, those truly painful four weeks! I do applaud myself!! Loudly!
 I'm sensing a bit of hope. And I'm holding onto it tightly:)
 Thank you for reading. Stay well

Thursday, April 17, 2014

Thoughts on having DID/ MPD

As I lay here and think about how to describe having Dissociative Identity Disorder, I picture myself running down a long, dark hallway with many doors. I'm being chased...always being chased, running from the angry, grasping hand that will hurt me.
 I used to feel trapped. I had to live in the house of terror, and I mean that with no exaggeration. The walk from school to parents house was a walk of freedom, leisurely and unhurried. My mind was allowed to wander. It was a brief respite I looked forward to.
 Living DID involved a good deal of uncertainty. Maybe it was typically for me to dissociate and find myself in a different classroom I didn't remember walking to or suddenly waking up, becoming conscious half-way through a reading assignment, being completely lost as to what had taken place all morning long till that point.
 Again, I see me running down the dark hallway with many doors. I'd try a door here and there. If one was unlocked, I'd dart in and try and throw another part of me out for salvation. 
 I know. Sounds quite strange. For some reason it feels important to write, even if it's not understandable.
 I lived more in intense fear than I did in nonfear. Always trying to get away, to hide. Never feeling safe or that I could get far enough away from the danger. I was perpetually exhausted. Under constant threat. Never felt safe enough to stop and catch my breath. No, danger was always imminent. 
 I slept with one eye open and with my back up against the wall. It didn't prevent my father from getting in bed with me but it made it a little less startling.
 I guess I've always wondered if I could ever stop running. If I would be able to just sit and be within myself...semi-comfortably. I think I can do that now.
I just have to convince myself that I'm no longer being chased.
 Maybe now the incessant running can stop.

Bleeding Acupuncture Point LI 1 Healing Lyme

I've always responded very well to acupuncture, partially due to my professional acupuncturist. Recently, I asked her to prick-to-bleed point LI, Large Intestine 1 and had amazing results I wanted to share.
 Bleeding of an acupuncture point can 1) invigorate the smooth flow of qi and blood 2) disperse blood stasis 3) drain excess heat and fire 4) can bring down yang rising.
 I felt that I needed it done, in laymans terms, to release some sort of blockage and stagnation in the meridian and the finger joint. 
 I am currently dealing with a Lyme Disease flare-up. The days preceding my scheduled appointment, I felt an unmistakable urge to poke and bleed LI 1 on my left hand. Part of my lyme symptoms involve arthritis in my index fingers.
 When my acupuncturist poked LI 1, I had an amazing visual. It was as if my lower abdomen, the very lowest pelvic region, was a rounded bowl. When she pricked I both felt and saw the bottom of this bowl light up with the color white. I also saw gravely, dark, pea-sized granules. The left side granules shifted, moved, rose up and dispersed. It was a remarkable visual sight. That area of my body felt clearer and the arthritis in my left index finger was gone whilst I continue to have the pain in my right index finger.
 I know that at my next appointment, I will ask my acupuncturist to bleed the right LI 1, as I could still see the gravely substance on that side.
 Large Intestine 1 is known as Shangyang and is a jing-well point. Ahhh

Tuesday, April 15, 2014

Lyme Disease

Lots to Say

First off, I want to thank my kind readers for their caring words and comments! It really means a lot to me! Thank You!
 Second, I am off facebook. Just not in the mood. You can leave messages for me in the comments, if you like.
 Third, did I ever mention how helpful therapy is? I continue to be amazed at how much my thinking changes and improves just through talking to someone for fifty minutes a week. Yes! I met with my Therapist yesterday.
 Fourth, I am feeling well enough to be out off bed and cooking food for myself:)
 Fifth; I do think in pictures, Autism. Words are slippery, changeable things that can be quite challenging to find and comprehend. Thinking in visuals, or pictures allows me to understand my inner world of thoughts, feelings and emotions with relative ease.
 Case in point... Let's say that whenever someone is born, they are given a small house, representing their physical body. From a young age, when my body was being physically hurt, I kept "leaving home", or dissociating. My home/ body was a painful place and I'd escape and run away anytime the pain was unbearable. 
 Being autistic means being very sensitive, having at least twice the amount of normal neurons (in my humble, one-sided opinion). Basically, I would reach the point of "unbearable" before a non-autistic counterpart. And I did have some truly hideous things perpetrated on my body, no doubt.
Thus and so, I regularly "left home".
Methinks, looking back, that being caught in my body was like being a sucker. Any fool would have realized how extremely unsafe and painful it was to every be in the small home I was given at birth.
 And that's...interesting. I was given, gifted with a physical body of My very own. It never felt safe and secure. The walls always trembled with the wind and the door was constantly being broken in. I never even had time to paint the walls or hang pictures. The legs are busted off the bed, but if I ever bothered to fix them someone will just bust in and break them again.
 It's time to tell myself...that I do, truly have a home and that it is safe and secure. No one can break the door down...anymore. It's time to mend the furniture, shore up the walls, throw a warm quilt on the bed and start living in here.

My Journey to Loving Myself Following Sexual Abuse | Psych Central

My Journey to Loving Myself Following Sexual Abuse | Psych Central
This is an excellent article on something I've mentioned more than once, self-loathing. It strikes me that I have yet to make peace with my body. I blamed and hated my physical body for feeling pain and sickness and causing/ exhibiting odd sensations (undiagnosed autism, body memories).
 Boy, it takes a lot of effort to walk into This room of thought. It is full of erroneous, negative messages. Time to open the door and walk in.

Monday, April 14, 2014

Found a site Lymebuddies.com

See, I'm not crazy or lazy. Never have Been! All my strange symptoms that sent me to the ER and doctors has all been due to having Chronic Lyme!


LymeBuddies on Facebook
Symptoms of Lyme
Early symptoms soon after exposure by tick bite:

Skin rash around tick bite – often hot to the touch but not painful; may have bullseye shape. Not everyone gets a rash!
Erythema migrans (EM) – the official name for the tick bite skin rash
Mild illness
Flu-like symptoms
Fever
Chills
Malaise
Swollen lymph nodes
Headaches
Stiff neck
Fatigue
Muscle aches
Body aches
Neck aches
Arthritis
Joint pain
Knee arthritis
Neurological symptoms – often occurring some time after exposure, from weeks to years later.

Numbness
Limb pain
Limb weakness
Radiculitis (numbness, tingling, burning)
Bell’s palsy
Visual disturbances
Poor motor coordination
Encephalopathy
Memory loss
Difficulty with concentration
Change in mood
Changed sleeping habits
Thinking difficulties
Nerve damage – in the arms and legs
Encephalomyelitis-symptoms
Limb weakness
Motor coordination problems
Muscle weakness
Meningitis symptoms
Fever
Stiff neck
Severe headache
Heart abnormalities – heart problems
Irregular heartbeat
Dizziness
Shortness of breath
Not all patients with Lyme disease will have all symptoms, some can be specific to neurological, heart, psychiatric, or physical (muscle & joint pain, etc.) The symptoms can also present differently at various stages of the disease progression. Some patients do experience all the types of symptoms as this is a multi-systemic infection, infecting multiple parts of the body and causing extensive symptoms. To complicate matters, many of the symptoms are not specific to Lyme disease, and can occur in many other diseases as well. This is why it is known as “The great imitator” and can make it very hard to properly diagnose.


- Posted using BlogPress from my iPad

Battling Lyme Disease

I typed in "Lyme can barely move" in google. I found a blog about an Aspie woman with Lyme. Excerpts:Lyme is Such a Pain
For nearly the past decade I’ve had pain that the doctors could not explain. I’ve had MRIs, CT scans, X-rays and more blood work than I could have ever imagined having. I’ve had nuclear stress tests, regular stress tests, ultrasounds, physical exams, and no one could come up with a thing. I had been told that I have severe osteoarthritis in my neck (I don’t) and that I have RA. I don’t. I’ve been told that I have Fibromyalgia, CFS, and possible mixed connective tissues disorder, Lupus and possibly MS. Possibly MS? They do have tests for that, you know, and they are usually pretty conclusive as far as I’ve been told. First I have Sjogren’s Syndrome, then I don’t have Sjogren’s Syndrome. First I have Celiac Disease then I don’t have it, then I do again. What?! (For a bit of an intro into this please see my post: It Begins With a Bite: scroll down.)

I’ve had doctors even tell me: “Why bother testing for any of these things? We still won’t be able to do anything for you. Learn to live with the pain and exhaustion.” Great doctors.

A month ago the diagnosis finally came: Oh! You have Lyme Disease. You present just like someone would present with Lyme and since all your other tests have come back negative, then that’s what I believe you have.” Blood taken (again) test results back: LYME POSITIVE. Now an explanation.

I cried so hard when I got that diagnosis. It was a combination of knowing what the hell was going on finally and “Oh my God, I do not want this stuff.” Chronic Lyme is no picnic. I hoped for vitamin deficiencies (which I do have as well) and for nothing more. But something inside of me knew it was true. I’d told doctors about the tick bite and I had even been tested once near the beginning of the ordeal but the doctor NEVER gave me that section of the test results. I had no idea they’d tested for Lyme. The results were negative anyway. That is very common to have happen. If you don’t have enough antibodies in your body to the Lyme bacteria then you will test a false negative. Over a decade I’ve built up plenty.

The pain a person goes through in Lyme is multi layered. First, there is the horribly, unbelievable physical pain. It is unreal the severity of Lyme pain.

Last night my head felt as if someone were trying to squeeze my skull with a vise and poke holes through my ears with long, thick, sharp needles. The pain in my right shoulder was not like a bursitis pain during the night last night. It was very concentrated in one specific spot and was excruciating. Not searing, not burning, but sharp and stabbing on the surface as well as running deep down inside the joint.

Many times my hands hurt so badly that I can barely type and it takes me forever and a day to get something simple down on the keyboard. Sometimes it’s hard to hold utensils to eat my meals.

I have a super high pain threshold and so I tend to take on a lot of pain. I do not rush to the emergency room, though I most probably could have several times over the last several years. Instead, I save my ER visits for those times when my heart is doing things that frighten me the most. I hate going to the ER because they run all these tests, more radiation, more chemicals, and they always say: “You’re in great shape.” Well, hell, thanks for telling me. I shall now go home and do my happy dance. I’m in great shape!

Spirochete do not show up on these tests. They do not see the actual damage being done or the reason for the pain and extreme exhaustion. When you’ve been fighting an infection for any amount of time, your body gets very, very very tired. Just think of how you feel when you come down with a really nasty flu or a case of bronchitis. You feel horrible. Your body aches everywhere and you can barely move. That’s what it’s like with Lyme but worse. I have had some pretty nasty flues in my life and having Lyme for almost a decade means I’ve been fighting these kinds of symptoms and so much more this whole time with very little reprieve from it all. People with Lyme Disease are real fighters. They are also real sufferers. Hopefully, we’ll be survivors and eventually Victorious too.

Sunday, April 13, 2014

Wish I could run away

To a place that had answers to what ails me, to a place where someone says "here, let me help you. I know how much you hurt. I know what will help."
 To me, debilitating illness is when you can't take care of yourself and no one knows or can help you feel any better. It's when you have to muster all your strength, push thru enormous pain and fatigue and convince your body you can do this. The piece of bread out in the kitchen will be worth this much effort.
 Seriously, this is crazy ass, debilitating, ferocious illness.
 Having disease and distress in which no one can say, "here, take this, it will help."
I'm in a place with no answers, not even a hint. 
 I stopped all detoxing practices. Read last night that if the body is that fucking miserable it's either from under detox Or too much. Had to analyse...based on my body sensitivity, I established that I'm doing way way too much. So I stopped everything. I'm still thoroughly, through and through exhausted sleeping heavily most of the day, but I was able to get up and cook for myself and actually eat a warm meal. The aches and pains are lessened as well as all the intestional/ stomach high discomfort.
 Sleeping is a most natural way to heal but it doesn't work when you have a family to take care of. I've pretty much fallen short in teaching my kids to care for themselves and those who are sick. 
 Yeah, I'd run away to this mythical place called "Grandmas Place". She was the only one who could look at me and see that I was hurting and sick. She was the only one who would voluntarily help me. She would cook for me. Sit and eat with me. Get me a blankie if I looked cold. Bring me an aspirin. Ask me how I was and what she could do.
 I'm even having a hard time mentally finding and getting into an even purely visual, dreamlike place where I can feel warm, safe and comforted.
 It really is a bitch. I don't know.
Physically, I'm a wee bit better, which I'll gladly take and means a lot. Everything else, well, I'm getting through this day.
Don't know if I have any hope at all but I'm still here and I know my kids appreciate that. I know they'll help if I ask them. Don't know if or when this misery will ever end. But I'm making it through today.

Saturday, April 12, 2014

Living with the Lyme

So it's been four weeks of continuos flu like symptoms; aches and pains so bad I take pain meds when I just can't handle it any more, fevers and chills with sweats, no appetite just a few things taste good..empty ice cream sugar cones, apples, Cheetos, toast mostly; takes all the energy I can muster to get up; itchy with various rashes going on.
Oh, don't forget the various headaches, intermittent numbing and tingling!
 Can't tell if I'm detoxing and getting better or the same with moments, hours of feeling worse, like shit.
 It's pure hell having a disease with no singular proven treatment, just hit and miss of advice and trial and error crap.
 Can't believe I'm still here in this awful sucking place.

What I wouldn't gve

For one, single, solitary, caring, able person to ask advice and help from. What I wouldn't give for one fucking volunteer to raise their hand and say, let me help.
Argh...........

Incredibly Sick

I don't know. How I can be so fucking ill for four weeks now. Not sure how I manage to get up, physically, off the bed or couch, a dozen times a day. How I manage to do, basically, every single chore that I have to do when well.
 There is no one to whine, bitch and complain to about how sick I am and how I feel. There isn't anyone to say,oh, let me help you with that. There are no volunteers or anyone who gives a shit and can actually help. No sense or need to verbalize it, even if I were to manage to find the words for how fucking miserable I am and have been. No one to hear anyone, so why bother.
I'm sensing that I'm all pent up, spinning in my heels, lost and forgotten because, as per my pattern, I am responsibe and expected to do my tasks and chores. There is no outside help, never has been and never will be. If you can't get up to make your own dinner or the kids meal, then no one fucking eats.
 There is a downside to having trouble communicating and having no one outside, friend, otherwise who wants to help.
Same story. Hasn't changed. I'm not asking for help because it doesn't exist. I'm dragging my sorry, sick ass around and giving 125% every fucking day even while feeling absolutely horrid, miserable, wracked with pain and suffering. Yup, the fuckin sags continues.
Fuck this shit

Thursday, April 10, 2014

Aspergers Grieving


Karla Fisher
asdculture.wikispaces.com

I discovered ASD via grief.

It was on my 47th birthday that I actually had the misfortune to witness the death of my father via stroke. Had I entered the room just five minutes later, I would have missed hearing his last words or seeing the terror in his eyes as he fell victim to stroke. I stood helplessly by, watching him go dark and watching him being airlifted to Hershey Medical Center in Pennsylvania.

Until that time, I had never really lost anyone in my family with whom I actually had any sort of relationship. My emotions were strong but I had no way to process or deal with them. I cried a tiny bit in the weeks that he stayed in the hospital in a dark coma, but mostly I was uncomfortable with all the weeping and emotions from my other family members during this time. I was pretty rational and emotionally regulated compared to them and also highly interested in the science, research, and medical facts. It was logical to me to be as armed as possible with knowledge in order to be of some help.

As a result, I acted as the liaison between the doctors and the family, coordinating meetings for the DNR decisions, negotiating next steps, translating the charts, etc. Upon my leave from PA and on my way back to Oregon, I visited my daughter in Los Angeles. I met a friend there who loaned me a book on grieving. I researched grieving and all the phases of grieving and it felt like I was doing things mostly okay. I cried and I had some anger, but denial and bargaining never really made sense to me so I figured I could skip them okay. I turned my energies towards the physical part of taking care of me. I made sure my diet, exercise, and sleep were on track.

After about two weeks of down time, my head was clear and my body strong and I was bored with the resting part so started back to work. At first I could not really focus on anything and I thought that was probably okay given that it had only been two weeks. But after a while, I noticed that my lack of focus was inhibiting more than just my job and it was more than just a lack of focus. I realized that I could no longer put pieces of data together anymore in any situation. Emails were all single entities and my program at work was nothing but lots of little pieces of data with no relationship that I could find.

Worse, I could not process anything visually, either. The parking lot turned into pieces of patterns made up of stones, cracks, water, leaves, etc. Leaves turned into patterns; trees were nothing but bark, ants and lots and lots of patterns. Weekspassed but this processing issue did not. Since I was useless at my job, I confided to my boss that I could no longer put the pieces together. I just assumed she would know exactly what I was talking about because I assumed that everyone put pieces of data together all the time every single day like me. She looked at me like I was crazy and sent me to grief therapy for some advice. It was by sheer luck that I chose a grief therapist who recognized my issue as autism spectrum disorder (ASD) symptoms within the first several minutes of our meeting. It was also my luck that he was sincere and honest about the fact that there are noavailable books or resources on helping a person with ASD through grief.

I could not believe this but later (after many attempts to find anything) discovered that he was absolutely correct. There really are no good articles on how to help a person with ASD process grief. It is with this hole in mind that I create this article.

Grieving and ASD Symptoms

The thing that probably helped me more than any other thing during my struggles was the realization that what was happening to me was sensory processing failure versus just going insane. Once I had this information, it became reasonably easy to understand what to do and I was able to focus on symptom management. You see, every brain only has so much space in which to process information, and if a very large part of that is consumed with emotions, it can easily result in failures of other areas. My colleague (Dr. Arnold) explained this to me via the "meltdown model" that I created here for you to see from her lesson.

 

In my case, I did not have outward meltdowns in the traditional sense, but instead I had shutdowns whereby I lost actual abilities. What this looked like to the rest of the world is that my autistic symptoms worsened... and they did. I had less ability to process information and therefore less ability to be social or to do any tasks, as my executive functioning skills were also impacted. Once I understood this bigger picture, it became a matter of me being aware of what was happening and what I was asking myself to do, and backing WAAAAY off. I got smart about sensory processing and did not do things that I knew would be very hard (like go to large sports events). For times I could not avoid going out, I got ear plugs that blocked out noise almost completely, which also allowed me to focus more on visual processing. I also cut back on my schedule and my self-imposed goals for a while.

I think that it would be very beneficial if therapists (as a first step) could all help the autistic clients in their care to understand how the act of processing emotions actually impacts other brain functions and how autistic symptoms will increase for some time. Spend time troubleshooting the failures by category and also becoming aware of the symptoms that are causing anxiety. Without doing this, an autistic person could find themselves in a cycle of anxiety/symptoms. After finding root causes of failures, build a plan to offer reasonable/intelligent suggestions and actions that help the client to deal with the symptoms, which helps the anxiety greatly.

How Do You Feel? Emotions, Ugh

It is my experience autistic people hate the question about how we feel. Some can answer it, I suppose, but I never seem to be able to. I remember during my own grief therapy when my therapist asked me how I felt and I could not answer. He then got a little more specific and asked me what did I do when I experienced death. Not sure again how to answer, I answered how most people react. I told him that I cried. I saw him smile as he was sure we were making progress. He leaned forward and encouraged me to describe how crying felt. I thought about it for a moment and told him very sincerely that it made my eyes hurt. He sat back then and belly laughed at my answer before changing the subject. It was only much later that I realized he meant the other felt. I still don't know how to answer that one ... How does crying feel?

The fact is that I have a pretty immature understanding of emotions (especially for an almost 50-year-old adult) compared to my NT peers. I also recently learned that the four emotions that I do understand somewhat have gradations for other people that simply do not register with me. Recently I took the time to draw out my own understanding of emotions. It is very important to note how my happy/sad understanding is very limited and always regulated versus my anger/fear experiences. This is obviously the reason I cannot process grief like the other kids. My grief therapist would have done well to take this model and help me to learn about sad feelings and gradations (click to enlarge):

KarlasEmotionPicturet.jpg
It is expected that NTs have a much more advanced understanding of emotions and gradiations within those emotions. But because my understanding is so simple, life isn't about how I feel but rather what Ido.

The second best thing that happened to me during my grief therapy is that I got involved in ASD advocacy work. All of a sudden I had something to do that not only consumed my mind but also helped others. This work helped me immensely to get back to normal.

An ASD person who is grieving may be well served to take on a new venture or a new project in their old obsession. Get immersed in work and what they love to do. I do not believe that TV or video games will have the same "good" effect, as I believe the real benefit is from the creativity/learning. Seek out some sort of project to help move away from grief. It is well documented that a project that focuses on others will increase happiness.

Finally, I set very realistic schedules and goals surrounding my job and my fitness. I made sure to leave work on time by setting timers and made my work goals modest for the year. As an elite athlete, I actually reduced my weight lifting routine from a strength/performance goal to just regular maintain or fitness goals.

A therapist or caregiver should make sure that goals are realistic for the expected duration of grief.

Relationships

Again, my understanding of relationships is very different from my NT counterparts. This misunderstanding of views caused my therapist and me to stumble quite a bit. He tried to explain to me about how humans relate and how friendships happen, etc., and I knew that none of that stuff applied to me. It was frustrating for us both. My models of these things were very different from what he was showing. In fact, my relationship model is very, very simple. You are either a friend or not a friend. If you are a friend, you get me 100% as I am. Had my therapist understood my views on relationships and how my father fit into that view, he could have offered me a lot better advice or at least not confused me with his models.

My model looks like this (click to enlarge):

relationship.jpg

Anyone giving grief advice or therapy to an Autistic person should first understand that person's relationship model. How dothey view relationships? Many/most ASD people will not be able to just spit this information out. It took me a few months to come up with this model and the subsequent filter model. You can show them several models, including this one, and ask them which one they relate to as a person with ASD. Only then you will be able to discuss reasonably and accurately that person's loss.

ASD Grief Things to Think About
  1. May or may not cry or overtly show emotions. Alternatively, emotions may be delayed or very extreme when they do come.
  2. Grieving will very possibly manifest itself via increased ASD symptoms (increased sensory processing issues, shutdowns, meltdowns, decreased social abilities, etc.).
  3. May be unable to articulate what is wrong or talk about feelings.
  4. Increased desire to be alone to work things out (this is opposite of most NTs who will feel better by sharing how they feel).
  5. May not relate to many emotional or relational concepts designed by NTs.
Things That May Help...
  1. Taking care of the physical part of the body (nutrition, sleep and exercise).
  2. Alone time.
  3. Learning about ASD symptoms (increased awareness about sensory issues and taking care to avoid triggers).
  4. Time spent with obsession.
  5. Getting involved in viable projects (focusing on helping others).
  6. Setting realistic goals/expectations for recovery (grieving symptoms can last for longer than 1 year).
  7. Discovering/exploring new areas of interest or special interests. Many people with ASD are avid explorers or wanderers. Take some time to explore or wander. Take up an instrument or new language, etc. Learning helps to calm and to process feelings.
  8. Understanding that your way of grieving is not like everyone else's (the NT world) and that your way is just as valid.
For Therapists and Caregivers/Loved Ones:
  1. Make sure the ASD person is taking care of the physical part (nutrition, sleep and exercise).
  2. Give space.
  3. Understand that they may not want to speak of feelings or even be aware of them.
  4. Teach about ASD symptoms and symptom management versus focusing on feelings or talking about feelings.
  5. Send clients to research ASD cultures and send them to places such as Wrong Planet to make discoveries about themselves as a person with ASD. Just like NTs, people with ASD like to share things like this, but our language will sometimes be sufficiently different that we will find comfort only within our own kind. (We can speak more bluntly about things like death for example.)
  6. Validate their way of grieving (not crying at a funeral does not make them a monster)
  7. Allow more time to process information (keep concepts/data minimal). Some sources recommend two to three times the amount of time for CBT than an NT client needs.
  8. Encourage special projects and/or involvement in activities that are related to special interests. People on the spectrum are often helped by focusing on learning/doing.
  9. Learn where the autistic person's emotional and relationship understanding currently are and teach from that, rather than from the currently existing NT models. If the person cannot articulate their own model, begin with the ones in this article as an example and then show the NT models. Encourage them to start talking about how they relate with respect to these two models. This will start the process. From here, work can be done to increase emotional language and awareness.
  10. Encourage exploring or wandering.
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I hope this is of some help and I am looking for more feedback, suggestions, etc. Please visit me on my Facebook page for comments: Karla's ASD Page

A version of this article was originally published at asdculture.wikispaces.com. Please visit that page for future updates, and additional resources.

Monday, April 7, 2014

Sunday, April 6, 2014

Being Able to Let Go of the Bad

Earth shattering truth struck me in the darkness of midnight as I lay waiting for sleep that would never arrive...
 Within my hands, now, something I never had before...the power to release all the bad that had been imposed upon me.
 Growing up, I had to suck it up, hold it in, teach myself to become a liar, believing that an accidental release, a slight slip of the tongue, would allow others to know the hideous crimes I was committing. I was entrusted with the secrets of incest, the ongoing, thrice weekly child rapes, the neglect of hunger and daily needs, the daily beatings and the extreme distress. I had to lie to everyone, a crime against my soul and completely against my autistic love of truth.
 I hated myself for the believed "guilt". Hated myself for being an unwilling, coerced party to mayhem and sadism.  I knew right from wrong....and yet I could never let out, speak of or give any hint of all the wrongs. I ingested, became, took in, all that was bad. I was the outward and inward antithesis of everything I despised.
 Now, I am safe and free. Ive been mouthing and whispering these words for weeks, "I am safe and I am free." After weeks, I can finally believe it.
 My life is now my own. No one is actively trying to hurt me, so life is good. I may be quite slow in processing information but I certainly get it now.
 I know good from bad and now I can release all the bad.
 I can talk about what happened. I can recognize and release the old patterns. I can forgive myself for all erroneously perceived "guilt" over crimes that were never, ever mine.
 I can Seperate what I was taught from what really happened. I open my hands allowing the clenched fists to finally let go....of my fathers, my mothers, festering, toxic garbage...the waste of generational abuse.
 My hands are open and raised for all to see.
 I am good, an intrinsically good, honorable and carrying person who was sadistically tortured and traumatized, twisted into such hate and cruelty. I let go of all misbegotten ideas ad thoughts that I was ever a bad child....not a speck of bad belongs within. I am and always have been completely innocent and pure. It's time to breathe in all the wonder that I am. Time to accept all my good. Time to release, to speak, to write and let go of all the bad.
 Buckle your seat belts. It's going to be a bumpy ride to my personal salvation.

Wednesday, April 2, 2014

Changing Patterns

We are what we tell ourselves we are. For a long time I've told myself I'm abused, beaten, sick with chronic this and painful that, confused, misunderstood...you get the picture.
 It's time to change the inner repeating message that runs through my mind day in and day out. I searched for a song I could play, over and over, on the automatically repeating and constantly playing tape recorder in my head. I found it.
 A song, prayer, a message of hope and love. The St. Francis prayer. My favorite version is sung by Angelina. I play it every morning and a dozen times throughout the day. It takes me awhile to memorize all the words. The words scroll across a "screen" in my head, like a teleprompter.
  I'm changing what I tell myself. I listen to songs instead of old, worn out, negative messages. I'm learning:)
This picture is a photo of the Manistee channel near where I live.

The Meaning of Life :)

Fear Not Death