Do as Monkey Say, Not as Monkey Does

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Greetings.  Thank you, Anywhere County USA!  

You have activated the social justice warrior within me, and now that I have the voice that was my mother’s out of my mind, soul and heart (do see the ‘Dear Mom’ letter if you so wish to delve a bit) –

 

There’s a need to expound a bit, as I feel the need to – for the first time  ever in writing – share the other side of the “Mom circumstance”. I have come to the realization that I will never have my birth mother’s – well, anything – and that is okay.  

Once upon a time, I had a ‘heart and soul Mom’, the ‘Mother to my heart’ is what I called her.  It was my dear Grandmama Helen. My birth mother’s Mom. She is the one person in our family that did not judge me, did not condone me, did not hurt my heart.  She loved me unconditionally. She did not question my oddness, my Sarahisms… she just loved me. She and my Granddaddy are the ones that took me in, moved me to their home in Fayetteville, when I was 14 and being disowned by my parents.  We were stationed overseas and I was a threat to my father’s military career. So, the best thing they could do was remove me – as if I did not even exist – and that they did. I moved to Fayetteville, where about 6 weeks later (March 14, 1987) my Granddaddy quickly succumbed to cancer and died after the first round of chemo.  

A few years later, my parents convinced my Grandmama to sell that house and buy the one across the street from them in Alabama (where we moved back to from the last overseas tour of duty), so they could help her.  This is where the rest of this story takes place… in 1996.

Grandmama turned from ill to grave one day, and was found passed out across her bed with the phone in her hand.  She had poo’d all the way down the hallway trying to get to the ringing phone to catch the morning welfare check call from Hospice. My Grandmama did not want folks going out of their way, and she had hustled because she did not want them to call out the first responders to check her for no reason.

At the time, I worked overnights at a station in Columbus, Ga – running the overnights and handling production requests that required a female voice.  I quit this job to go to my Grandmama when I got the call that June morning. With apologies to the Operations Manager, it was not my norm to leave without notice.  

For two weeks I cared for my Grandmama who was in a comatose state.  I’ll spare the day to day convalescent care, but I was there 24/7. When she woke, I was there at her bedside reading a John Grisham novel (somehow I was going to become an attorney, an honest attorney, and use my knowledge to save this world, and I loved those books).  When she called Barbara over, I was there when she told her final wishes. Wishes discussed previously with her doctor, where Barbara had also been present. Grandmama reminded Barbara of her signed directive, something that I had been a part of, too. I knew what was coming.  I knew what Grandmama wanted.

When that moment came a few days later, Barbara handed me the bottles of pills and walked back across the street.  Barbara the licensed registered nurse gave that task to me…. My Grandmama and I had a long talk. We cried. I begged without begging to be taken off duty from this, but the thing is I loved that woman, that sweet country girl that was her spirit til the very end.  She had been the one and only who had loved me weirdnesses and all, accepted me without even a hint of criticism… She made me promise not to stop. She told me what to do once she fell asleep, and not to stop…. I started a log as she directed, and gave her the first dose of her meds.  

I was the only one there, the house felt so small around us.  When she fell asleep asleep… and I could no longer wake her, get a vocal response and the next step had to begin, I think I wanted myself to be transported anywhere but there.  I had made a promise…. I had made a promise…. I kept my promise til the end. Then waited at her bedside hour after hour…. Hour after hour …. It was late at night, 11 pm, when the rattle began, the death rattle…. It is a sound if you have never heard it, well I cannot describe it to you – once you have, you will never escape the memory of… I held her hand, I remember how I shook from the center of my being through my skin, an earthquake of feelings, holding her hand in mine.  Hours and hours more… so it seemed…. Just as it turned the darkest it had ever been and it was just before dawn… it happened. Not quietly, peacefully…. But with a violent outpouring of bile from (it seemed) every orifice of my sweet Grandmama’s face, all over us both…. The sun was just getting up in the sky when the responders and coroner showed up, when I remember being in the driveway with my father whilst Barbara was inside wailing like a baby…. I remember asking the coroner where she was going, what funeral home, because no one was touching her face if it was okay, but me.  Next day, my one highschool friend, Connie – who was a hairdresser – met me and she did Grandmama’s hair and I did her makeup because she needed that – to be herself, not what a stranger thought but what I knew her to be. That night, my father made arrangements for her funeral in Fayetteville, NC. I did not go. Grandmama wanted flowers in life, not a fuss in death… I had done my best to give her that last bouquet of her creation, at her directive.. .in life… and could not would not be going to the funeral. I drove back to Auburn/Opelika, to my cats….

…I am not sorry to say, you are about to be Sarahfied.  You have royally pissed me off, Anywhere County. Not just for my family of three, but for the masses that are being not heard everywhere!

I am going to aspie out on you and if you have thick enough skin to make it to the end, you will be a better person for it.  You will learn something. If you use that learnin’ to do somethin’, if only within your own self, then you will grow. You will see part of the spectrum of issues that I am all too understanding of already from every angle.  Every. Single. Angle. Including that of the ‘other side’.

We live in a society of hypocrites.  Real life we see it happening, our ‘leaders’ putting on this big damn show about the babies – save the babies, ban abortions, save the children!  It makes for good television news, it may make for a good way to shuffle papers and play the bureaucratic game they do, but it does not transcend into reality day to day.  

Those same leaders that want to save the babies are complicit with babies and children being held in concentration camps, trafficked and – OMG some are ultimately slaughtered so that they – yes, the same fucking people – can have the elixir of youth.  No they do not admit it, nor do they want the world to know anything about it. We are hell and gone from that point (thank you, world wide web!)- Pedogate is real, it is global, and it extends into all levels of our leaders and beyond.

The family courts say they want to ‘help heal families’, get them ‘healthy’ and back together.  Perhaps the courts do. Perhaps this judge does…

However, without the truth – the whole truth, not just what is provable by the attorneys – that simply will not happen.  And, without hearing from me, your Honor – fully, without the boundaries set by the fluorescent lights – the whole truth you may never know.  I understand that any statement I write and submit to my attorney, even when addressed to you, will not be seen because of email rules and law.  So here we go – using my right to free speech in the public forum. My initial statement is here.

If one is going to repair a gaping hole in a wall, there are choices. You can take the time to measure, decide if it needs a drywall patch or the mesh tape and putty, fill it in, sand it and paint it.  Or – you can cover it with wallpaper and call it ‘done’. No one will see underneath it, right? Until it is leaned upon, or someone wants to hang a picture, may never know that hole lays beneath the surface.

I’m fairly sure that I have now busted the wall wide open.  Fairly sure that I have exposed all the ‘issues’ and I have already taken measurements and I know how much drywall it’ll take to rebuild it.  Thing is – the analysis, the quote, is not being read or understood.

I know that in any building, be it physical or metaphysical, the ‘building’ is only as strong as the cornerstone on which it is built from.  In a family, that is the parents. In our family – that is me. I know of my weaknesses, as they are perceived by the allistic world as such – my traits.  I know what I am made up of – yes, even the worst of me – and I have traced a lot of it back to its origin. Some I have regurgitated all over for whatever good or bad it can do in being judged, analyzed, acknowledged and – dare I say – accepted and understood.  Some – I still hold onto, because though I know the truth, I have yet to find the proof of it, and my mind is protecting me from it.

Let’s be really real here please.  I hate spotlights, with this exception because in allowing its harsh beams upon me, we will bring about positive change in the end – hopefully stretching far beyond our family.  But I wanted to say this- without sounding ego driven as it is absolutely something that I am still whispering to myself:  I am stronger than I/you acknowledge, I am a warrior – that I live daily with complex ptsd, I am Asperger’s with a very heavy trait load, and micromanage a myriad of comorbids that go with each, and do it by myself as I have  done most of this life – I am a force of the universe, all 122 pounds.

I felt judged today, by the Judge – and everyone – because I didn’t LOOK as good today as I did yesterday.   Well can we just break that apart? This is the third morning I have presented to the courthouse – the second with just myself (I had a person on Monday).  This morning I am overly tired. I have walked through a lot of moments and have processed them – but it is not something that happens in mere moments. We are talking hours – days – of mental work.  

Ask any autistic about processing and recovery from said processing, and though we are all different we share a common thread in that it takes us longer than the allistic brains around us. Said another way, when an allistic brain walks out of the courtroom they have likely already compartmentalized what happened and have moved on to the next thing.  When my autistic brain walks out of the courtroom, I have to work through every moment, which is not limited to the words spoken. I have to process and/or recover from the bright lights/noise, remember everything that was said and review for context cues both vocal and non vocal that I may have misunderstood or missed in real time, and if there was a lot of emotion in the room I have to process and recover from all of that, too. That is just a start, btw.  

I said in court, “I can mask or I can make sense today, but not both.”  

That was not good enough, I sensed it, I almost heard it internally.  The message being that, although we have to accept that you are autistic, we do not have to accept your autistic traits.  We do not have to accept that you are tapping and flapping simultaneously and that those behaviors are normal. Can you be less autistic? Can you be autistic and still show up to court looking well rested, be on stable feet/have your balance (which I did not today), and know precisely when to speak and what to say and with what inflection to say it so it is well understood?

I know that none of those folks would be able to – daily – face the day, in any way, if they had to micromanage what I do on a daily/nightly basis.  Any one of them, if they struggled and fought as I do to stay in control, to stay in the now – to make it to the dawn, get up and face the proverbial music on too little restful sleep and sore from fighting or running from the phantoms while asleep – would be calling in sick on the regular.

I am badass.  My soul – My Sarah with an ‘h’ soul has risen from the ashes becoming the phoenix that she is – she has taken down and fully kicked out of her space the voice that permeated and tried to take her out for the majority of her entire life- that voice of the never gonna be satisfied with you, never gonna accept you, approve of or unconditionally love you piece of work that is my birth mother.  That is who died last week.  That is what’s yet to be recognized,  but you will – I conquered her and sent her packing!  This stuff isn’t pretty and I am not naturally graceful between the screwy physical alignment issues, Aspieasfuck brain compounded by cptsd, so I apologize for the mess that followed.  Creation – and especially re-creation – means busting open walls. It’s messy.

 

It’s imperative to understand – I did not ask for C-PTSD.  I know it is my mind playing tricks on me, I know it is not real – but it IS real in those moments, those dark hours, those days one after another… instead of granting some grace, giving some credit for facing it/handling it/riding it out… whatever it is that I have to do to get to the other side, and then show up for court – you want to make me feel bad, badger me a bit, bat me around mentally – like I am not doing enough?  Not good enough? Not standing there normally enough?

 

PTSD results from one incidence.  A car wreck. Surviving a fire. Living through a hurricane.

 

C-PTSD results from trauma after trauma after trauma…. Autistics are often bullied, and abused, as we are just more gullible, trusting and malleable overall.  It is part of our naturally occuring neurology. Autistics of my age – we that are the lost generation left unnoticed and undiagnosed til late adulthood – whether with a history of childhood abuse or no, often develop cptsd as a result of decades of bullying.  I am so thankful that children now – my son, his peers, the autistic children globally – are given supports sooner.  They are (hopefully) watched out for in school settings and elsewhere, so they are not bullied.

 

I was not so lucky.  I got it on every playing field – physical bullying, emotional, mental, and sexual.  Can’t recall how many gravel sandwiches I ate in elementary school…. One too many though, for sure.  Nevermind how many times gum was thrown into my hair on the bus through high school, or how many papers I typed because I was told I would be invited to the graduation party.  BTW – Brian (my lost-now-to-me brother) – if you ever read this, I wanna thank you for helping me egg and tp the party house that night!  It was the most, though I am still sorta ashamed of the destructive bit of it.

Just the facts, not feeling sorry for myself.

Add a dose of feeling your hair come out of your scalp, hearing cries you cannot comfort, add not being able to swallow or fathom trying to swallow food because what you feel instead of the food going down your throat is your ex’s hands squeezing just a bit more…. OMG I CANNOT DAMN BREATHE!

The sleeping battles. The convulsive, uncontrollable shakes withers and and what the fuck is it I am trying to get away from, you are not double jointed Sarah… how did you move like that ……… I do not know.  I do know….I do not want to know…. No no no no no…… fetal position please protect me and let me see sunlight….My  brain as broken and non normal as it is, should be honored for being so freakin’ badass it has and continues to keep me safe from that which I cannot handle on my own, by myself.  Thank you, brain!

Hey,  I got up this morning!  I had coffee, got dressed, brushed my teeth and tried to brush my hair.  I drove to the courthouse. I was there early.  I was there without an advocate.  I was there to stand on my own, to play a game that I do not keep up with in real time.  I was shaky, but I was there.  

To be clear – I do know without any question that it is the PTSD that is the issue most concerning to everyone involved with us and hey ….. That includes me!  I did not ask for this, I am merely as have been – for decades now – trying to find the way through it to the other side.  Looking for the answers on how the hell do I do this…. With this….. That I did not ask for…. And do not want….. I have asked it to leave, shown it the door, even tried to boot it into the next century a few times to no avail so far but I am working on it.  Just like any one who walked a path they did not choose and would never have chosen even for their most disliked enemy, I seek a way to move away from it. Or understand it, so I can get on top of it – control it.  I am strong, I am brave, and I freaking Rock! I face this, have faced it, even when not knowing what I was facing or what I was doing or supposed to be doing, but I have been at it – I shall stay at it, til I drop from total exhaustion or this gets properly rebuilt.

What I have seen glaringly obvious through the course of doing …. Well, this…. Is the hypocrisy.

Time and again seeking after help, what maybe I did not know but something, hey you know what is going on here?  Can you help us, please?

Included in the lot of efforts is a call as a parent in need of assistance to local County DCF.  Please go on and check, it was April 2017. April 6th if I am not mistaken. The case manager came out, did his interview, and then retired.  No one else bothered to follow up, no one called to check on us, to check on me as a parent asking for assistance. Is that not parental capacity?  Did I do the wrong thing, calling for help? Why did they not help?

I am wondering, your Honor – since none of the DCF attorneys, case workers, or the GAL seem to have an answer – how is this OK?  

What I have come to understand is this – they are saying that they are there to help families, but the truth is…. If you want the truth…. It’s up a small road that leads to ‘Who is making the money here?’.  

Not different from the Henry Ford car, or the dis-regulation of natural medicine.  Laws are written to suit the ones that are meant to be beneficiaries in some way to their passing.  They are not written with an authentic purpose of helping the masses. If we are being honest, then the gruesome four would have said “Screw the oil fields I just invested in, the paper mills I just bought!  Yea Henry we love your hemp car! It is stronger than steel? It runs on biodegradable, renewable hemp fuel? Awesome!”

Now I’m just imagining here, but if we had used hemp to fuel our cars (and left the finite resource of black gold alone in the ground), instead of the black gold that has created a cesspool of our environment – how good would that have been for the masses of humanity?  Those who have gotten sick working in the oil industry, not to mention the illnesses many deal with from the pollution created, and then there is the mass benefit that growing all that hemp offers – cleaning the air, creating work in raw harvesting and then production of the plant, not causing global warming with our too many, too greedy and needy machines and industries that run on oil products.  Not to mention, we would not have an overflow of plastics to contend with as hemp makes the same things! Yes, Sir! So the animals would’ve been happier, how many species are now extinct or on the verge of extinction that could have been saved. Ahh, but Hearst needed his paper factories and the rest wanted to roll in oil soaked millions.

Seems that the system is created to be funded by taking children instead of helping families

If the system was set up  to actionably, viably help families, then they would help the cornerstone stay strong, especially if the cornerstone is waving her arms, flapping her hands, asking and asking and asking for the help…. Seems that it would cost less to provide help to a struggling mother on the front end – to ensure she can get access to health care, to mental health care as needed, to support services so she can micromanage as a single parent being asked to wear the hats of two people and fill at least double that in roles.  Seems to me that the system would follow the same concept as the airlines – Mom puts on oxygen first, then she helps the kids. Well – what we have here is the opposite. Let Mom suffocate a slow and painful demise, ensure she is as weakened and incapable, stressed and overwrought, as possible – and then take the kids.  Then help the kids and blame the Mom.

To add to that baseline came today – again – the ‘parentification’ of my daughter.  Are you kidding me? Can I shout this loudly, will you please hear me – neither child has had to play ‘parent’ to me or to each other.  NO my daughter has never had to be parent to her brother. She has not been doing his laundry, cooking his meals, saying night night prayers and tucking him in, or anything of the sort.  She babysat a couple times. Helped with his iReady a few times. That. Is. It.

If a person goes to school to become a doctor, the reason is to help in healing others, not to see them to death’s doorway.  

If a person goes to school to help the weaker, the disenfranchised, the abandoned/abused/neglected/disabled individuals of a society – that they should actually do the work that produces those ends, not take the bits that give them the outcome that is ‘easier’ to understand, to respond to, to present in court.

Yes I get it.  Again.  It is easier to say that I am crazy, unstable, incapable and incompetent to be a parent and embrace the bright eyed allistics spin than it is to actually look at the entirety of things including the parts not likeable, relatable, easily fixable – the parts that do not fit on the worksheet, the parts that blow the caseload, the bits that make everyone have to think outside the box, about unimaginable circumstances.  

Stuff like this can bring one who works in the system to a hard pause, I’d imagine – for the ones who are in it from truly caring. Question how to do things within the written boundaries/laws to affect a change.  

Trying to do the right thing without realistic rules in place to pull from, then leads one to say, “Make any change. If not a positive change, a change nonetheless”.  One that fits, somehow.  One that is provable/supportable by evidence, not necessarily the truth.

Well from this angle on the world, I see that truth is discerned by the person’s willingness to take in information, and how much information they take in is up to their own constitution.  Some just do not want to know what was done beneath the wallpaper….

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Purse Tales

purse photo

What’s in a purse.. Or any object really, that somehow follows a person from decade to decade, from innocence to innocence lost..

Hello, yes I know it’s been a long while.  These thoughts, many thoughts, long overdue as I have been treading a void of the darkest dark in a place ‘past autistic burnout’ for too long to remember when it started, to the point of mutism.  Inability to formulate thoughts into words be them spoken or written. Mine is a brain that does not turn off.  Ever.  On solid days, the endless trains rolling upstairs somehow jive, make sensible pictures and render the Sarah with vision and focus.  In these darkest of days, exhausted days, days knowing that I have to get ‘at the least’ accomplished, all systems aside from the needed ones stay in shutdown mode.  Just. Cannot. Process. The energy does not exist. The tide pushing against every effort day over day, month over month, year over year has led me to push away and push away from even the seemingly easiest of communications.  Have stopped trying to be heard in any form, have avoided social media of all kinds, even emojis are  just too much…

Diagnosis at age 46…. Just… wow…A lifetime of moments, of tears, of confusion, of doubts and wondering ‘where’s my home planet’ brought into focus – yes.  Finding some clarity, some self acceptance, does nothing to diminish the painful sadness, each moment a stepping stone in the path leading to the ‘now’. Again and again I find, understandable to me in my gloriously beautiful, malleable, gullible, accepting, diversive, nothing is simple webbed think tank of a brain – that I am lost in translation even to those whose aim is centered in finding a way to help.  It’s exasperated what bit of ‘function’ I have as all systems have demanded dormancy to recharge.

Does not help that I ended 2018 overdrawn as my paycheck from week prior to Christmas bounced.  Then, the replacement check bounced. After nearly 6 years of tedious devotion to this employer I stood up for myself – I quit.  Long past are the days when I had standard tasks to accomplish, a ‘schedule’ to follow – because one at a time, those clients found themselves ‘screwed’ in other areas – mainly with their webwork – and dropped the company as a whole.  I understand it left the owner speechless, as I suppose many are left speechless on the rare occasion that I have stood up for myself. Truly believed I would sit here day after day ‘in waiting’ to be needed to do whatever ‘bidding’, because basically that is what I have done for the past 18 months or so.  Basically that is what I have always done, regardless of what or even when – a lifelong combined condition of that which is me, never knowing another’s ‘true intent’, with a deep desire to be helpful or to please, with the hidden hope of ‘counting’, of gaining inclusion, of (finally) measuring up.

 The inability to create and keep a routine, having to recreate each day daily work to fill my billing sheet, went on for far too long. So I started 2019 unemployed.  Have had another unending headache ever since. CHANGE. Stress. Panic. SADNESS.

Working to find a way, with what I am and what I have – 46 year old aspien single mother of two, all of us traumatized from the path thus far each with our own challenges – always short on resources, been living paycheck to paycheck since my firstborn was conceived, but to be fair based only on my efforts since she was 11 months old (she’s 15 tomorrow!), no core connections/supports left (disenfranchised, lost one by one), totally overlooked, not understood, or forgotten time and again by the social services help sought…at a loss now… alone.

Recently, I found myself at the least reading posts in one particular group that I have an affinity towards – geared towards late diagnosis Aspies/Autistics.  We are the ‘lost ones’ in that we are a generation missed at the onset of our autistic traits – since Asperger’s was not even ‘established’ until many of us were already in our 20’s.  

It’s validating, liberating to read from others, that the behaviors and life designed by a game we did not have the rulebook for, are indeed not so odd.  Too many of us have estranged core family relations, and many for the majority of our lives. Many of us have too many days (weeks, months and years) where the processing overload from aiming to meet demands of family, work, daily life and the combination of unpredictable upheavals each adds leaves us clinging by the threads of a used tissue to get through the day, and we all fight for every drop of energy we can get just to take care of the day’s basics.  We are tired from the series of struggles that life has been so far – relieved we can understand why the struggles happened, but somehow – well, for myself anyway – this self understanding and acceptance stops short as the cumulative, compounding impact and associated collateral losses and damages have yet to be fully understood let alone helped or healed, outside of the massive webbed picture within my own mind. It’s a breath of joyous fresh air to read how others also can’t stand tight clothing, tags and omg – thong undies!  How others are just so worn from years of trying to blend, to be ‘acceptable’, to maintain the common world agenda of work, family, house, picket fence and 2.5 kids, coming up short (for myself anyway) in all areas because none get the attention and energy they need to thrive. Many are in long term burnout, and also many find that it is harder to pull from it the older one gets.

Yes, I see all the connections – more and more each day.  In order to repair things for my children, I rather have no choice to go beyond the sense memory portal, and actually dust those picture slides off to put them into perspective.  

About those thongs now!  I stumbled across a post a few days ago written by a woman asking about thong underwear, I had the biggest ‘spit my coffee’ moment in eons.  Thong underwear – but really, why indeed! I have never been able to wear thongs (I don’t like normal, tagless panties of any kind if you must know. Or tags.  Or clothes that fit) even back in my stripper days – and I said that, too.  This started a conversation betwix a few of us, to which I decided it was time to dust off my dancing memories for some sharing fun… and then those pieces started to connect to the current bigger picture, the butterfly effect shuffled everything forward again from point ‘A’ to the now as I snuggled in the darkest of dark places away from the world.  

It’s more than stories – these memories. It’s my ‘lost decade’ and then some. My end from ‘routines, known expectations, known responses’ began at 18. Prior to that, I lived in a world of controlled fear. Rigid rules at home. Socially awkward, not many friends (one friend at a time, for most of my youth), not much for popular social stuff but very interested in writing and reading, in finding a way to save the animals and the misunderstood underdogs of the world.  I had bouts of depression from 12 onward, issues with food began after our trip to England (at 13 years old) where we saw a slaughterhouse. That hit my soul with profound sadness so I stopped eating meats and became obsessed with maintaining my weight at 115 pounds, with not having any touching between my thighs, and with doing 45 minutes of aerobics daily. Shy, kept to myself mostly, always available to help a peer with homework if asked though.  Always looking for a way to help, to make a good difference.  I had structure though, knew what I was doing on an hourly basis. 

In those days, all my oddities and deficits were attributed to the hit and run I lived through, 1976 at 4 years old.  I can see the separation of the aspieness and the limitations from the accident, now when I look at it.  

Purse Tales: Part One

I have not thought of my stripper days in eons, other than in random humored mental passing, until I saw that post about thongs.  I was a nightmare of a stripper, truly. I have no natural coordination, amplified by scoliosis and being flat footed, so it was not something that I set out to do, rather it just happened.  Means of survival.  Attempt to live in spite of having no place in the world.  Every time I see the episode of ‘That 70’s Show’ where Kitty catches her hair on fire doing a strip tease for Red… I remember the awkwardness I had.

Super Bowl Sunday, January 28, 1994 – I boarded a plane out of Atlanta, with my three cats crated and checked, set for sunny northern California.  Twenty-one, feeling totally lost, misunderstood, without a viable ‘place in the world’, and on the verge of wanting to die but not die, needing to just not be ‘here’ anymore.  

This set of feelings was not unfamiliar to me, I had had it prior at 18. It was January 1991 when I left college the first time to find my place in the world outside of the one that I knew – one that scared and confused me – let me be somewhere besides where I was – which was not working.  Nothing worked for me after I graduated high school, not really. The summer prior to starting college was okay, but the day I got up to start college, a headache began. For nine months, that headache did not stop. I saw the doctors, they could not explain it, but the headache would not end.  Commuting to classes daily, doing my best to figure out ‘college life’ and meet the expectations set upon me for ‘doing my best’ by my parents, never actually believing I was measuring up because I was not – I broke. I ran away from my parents house, and within a few weeks got into the car with the cats and hit the highway.  I ran to Colorado, where I worked in a sandwich shop in Denver for a while, and when something odd happened with the owner’s son, I loaded up and drove back to ‘reality’. I recognize it as autistic meltdown and burnout now. The headache that would not stop – full processor malfunctioning. Overload. Overwhelm of massive proportions.

January 1994 marked the end of almost 3 years of going to college away from home, 3 years of consecutive quarters – once I landed there, I did not want to leave.  A serious minded, focused student I was – in psychology and theater. Sometime the fall prior, I had a detrimentally bad conversation with my parents, who disagreed with my line of study and did not support or understand me or my thinking.  Not that I was surprised, I had not and still do not have a ‘bond’ or ‘connection’ with them. I am the black sheep, was back then and assuredly am still.

For several months, I contemplated what to do.  I felt completely trapped – if I stayed, I was going to want to die.  I was not understood, I was lost and not finding any place that I particularly ‘fit’ other than with my thespian peers and within a small faction in the psychology department – with one professor in particular who inspired and motivated my onward march.  If I stayed and was forced to change studies, I did not want to go on. Over the following months, I came up with the plan to disappear. With the help of my one friend, a plan formed.. And I went, leaving the truck parked at the end of my parents driveway, locked with the keys in it, prior to hitting the road in her vehicle to the airport in Atlanta.  All roads ended where I had last been as far as anyone was concerned. I did not feel I had support to turn to, and I did not want to die exactly – so let’s find a ‘new world’.

I worked at a privately owned hotel for a while. I would inspect the rooms following housekeeping and then mark them as ‘ready’ in the system.  The pattern came easy, and I had no issues with the work. Ahh, but I had more experience and education than my supervisor, and was fired after about 90 days on the job.  Upon returning to the apartment I shared with two college guys, I learned that I was without a place to live, too. The one roommate was on notice from his parents, if I did not move out then he would not get the following quarter’s tuition and expenses paid for by Dad.

The ‘other roommate’ was the one that was my ‘friend’, the one that had convinced me that California had all the answers.  He helped me find a one bedroom I could pseudo afford with what I had saved, but I still needed work to maintain the rent and feed the cats and myself.  No furniture, a sleeping pallet on the floor. One pot, one fork, spoon, knife, plate, bowl… ate a lot of Ramen back then.

That’s what led me to ‘City Limits’ and stepping on a stage for the 1st time… in my ½” black heels, black silk Victoria’s Secret style nightgown, with my little black purse in tow (what I carried my cigarettes and tips in, I was NOT wearing money on my leg no way no how!).  A purse from my youth, given to me by my mother at 16 during days of being ‘wine princess of the Rheinland Pfalz’. A purse that had held a lipstick and house key, as I stood in pretty dresses alongside the other princesses ‘elected’ for the wine season (this is a story for another day altogether).

Thus came ‘Gabrielle’… one of three dancers without breast augmentation, and the only one that wore nightgowns instead of ‘costumes’, carried a purse, and preferred to dance barefoot than wear heels.  I did not make out well on the daily – If I broke 100 bucks, that was a ‘good shift’ for me. In spite of watching (in hidden awe, I admit) the other dancers getting ready, full of confidence, wearing what ‘sold’, and knowing what to say to the fellas as they sat with them, getting table dance after table dance, I didn’t really figure it out.  It was a juice bar, so no alcohol was sold, and patrons that appeared intoxicated were not allowed inside. The ‘conversations’ had to be stimulating enough to get a guy to buy expensive ‘ladies drinks’ off which we got ½ the cost (5 bucks each) or buy a table dance of which we kept it all. After the ‘getting to know you’ topics are covered, I really just do not know what to say – never have.  Small talk? Ok… That must be what earned one dancer 500 bucks and a dozen long stemmed roses from her one ‘regular’ on her birthday.

I bought 2” heels, which killed me but I wore them anyway, and did my best.  One fella offered to pay for me to get a boob job, to which I said ‘no thank you’, I was NOT changing myself.  I did not know why but I did not want to do it ‘that way’, if I was going to succeed it was going to be the Sarah way.  One patron had a fascination with my feet, and would pay extra for me to dance barefoot.  He wanted to pour wine on my feet and lick my toes!  No, that did not ever come to pass.

Some misunderstanding with another dancer brought about my exodus from ‘City Limits’ on Auburn Blvd. I honestly do not recall what it was – I did nothing, was not a thief, did not know how to pull a ‘con’ or take a client from another dancer, watched them do that to each other but I was more prone to sit alone in the dressing room between sets than try to ‘get out there’ unless I had a request to sit with someone as I came off the stage.   That propelled me around the corner to a place called ‘Tex’s Saloon’ – another calibur of strip clubs altogether. Full bar, topless with pasties only, two poles – a jukebox during the day, a deejay in the evenings. The ‘good ol’ boys’ crowd, California-fied.

The dancers there were a bit more ‘real’, laid back, not so snobbish or difficult to say ‘hello’ to each day.  They did not give me grief about my choice of attire, or my shoes, or my music – but when you are allowed to drink, things do change.  Allowed to drink – we were. Though I never did get the hang of climbing the pole, the turning upside down scared me and still does – that big stage was great!  I could spin and spin and spin some more! I could dance barefoot and no one gave me grief. I could chat with the patrons because socializing while drunk with drunks is much easier, the score does not matter as much, the awkwardness less noticeable.  It was a more casual environment, guys came with dates to play pool and carry on. That’s how I relaxed, I wasn’t running a con or giving them lines while sipping an overpriced ginger ale. I could play a game of pool and have a drink or two, and somewhat relax and blend.

On one such occasion I met a couple, Ken and Barbie all around, young with everything going for them.  We had quite the night one night, drinking and dancing, the lady watching my performances and practically coming out of her own top.  They came onto me, to which I did not know what to say or do. To this point, my ‘lovelife’ had consisted of one highschool sweetheart, and two different heartbreaks during ‘college days, part one’ both that suffered my aspien meltdowns as I fought and failed to navigate those dear college days.  Where relationships and sex were concerned, I did not know the rules. I did not know the game. I did not know, and I still do not know, to be honest. I was beautiful, enough so that professional photographers asked to work with me (two there in California – including one that used my legs as the cover of the Sacramento Bee for an article about strip clubs), and as long as I was the silent doll on the shelf, as long as I was seen and not heard, many sought after me.  

As for that couple, they wanted a threesome. I had never done anything like that, but was talked into it. We went to that apartment of mine, with no bed, and continued drinking. We messed around, all was good I guess – until she went to shove one of her fake boobs into my face and I freaked out. I cried. I asked them to leave. Total 180. I apologized and apologized, the guy was confused thought we here having a great time… but I shut down.  No. Stop touching me. Too much.

The deejay was a male model moonlighting for extra money. He rocked the place regularly, with the tunes he picked and his magnetism.  All the dancers wanted to go out with him but he never took their bait. One night, after a couple months of banter, he picked me. Instead of taking home the taxi, driven by the same person I always had, I let him take me home.  I do not remember what happened after the kissing. I have never remembered it – other than the next morning finding him gone and myself having had sex that I absolutely did not recall in any way. Hurting. Bleeding from the butt.  

I had a difficult time going back to work.  I did, for a minute. Then I got on the phone with some people ‘back home’ in Alabama, gamer friends (this was back in the days of the MUDD worlds).  Convinced it was the right thing, I got on another airplane with my cats, and landed in Birmingham, AL, where I started working at Sammy’s – until the deejay there took me aside, about a month into the gig, and told me he suspected that I was pregnant.  Turned out he was correct, and that meant no more dancing (at least not at that club). Still not in communication with my ‘family’ and not even considering them as a source of support or advice, I meandered back to my old college town in south Alabama. I tried to find a way to give that baby a ‘good home’ with parents that could and would do right by him/her.  I was just turning 22 at the time. Over a couple weeks time, I made the decision to go to Atlanta to have an abortion. Someone whom had been in classes with me back when I was a ‘good girl’, paid for the procedure and provided the transportation.

It was not a good day.

There were picketers to get through, and after the procedure was finished, the staff walked/pushed me through the door where I collapsed, caught on either side by the two friends who had driven me.  Slept the whole way back. Found out the next day that there was a single woman at the hospital interested in my baby….

To be continued… 

It’s Just Me…

Written March 2011, this is up to the time that I became engaged to the ex husband whom I was in contemplation about how to severe ties from yet again at the time that I wrote it.  For perspective, essentially age 4 – age 28.

Little girl, younger brother out for the day,

Here’s the ball sister, wanna play?

Oh wait, it fell in the road,

A little drunk, the woman drove…

Little girl, lays broken, good as dead,

Whatever is wrong with her head…

Doctors work, Parents pray….

Perhaps she will walk again one day?

Little girl, can you crawl, can you move, can you talk?

Open your eyes now, What is your name, please walk!

Will things be ok,Will she will ever be the same…?

Little girl grows, little girl crawls,

One day she again learns to stand tall.

However hard, she tries to play, she tries to laugh, she tries to stay…

With the kids, oh so cruel, do not know what she went through.

Will you play with me anyway?

Will you be my friend?

No, oh no, we will not pretend – Too weird, cannot run, ‘No, you cannot have fun, we will not play, you have no friends to play with today’.

Little girl, now big girl, it is time to read, to write your words and make good scores.

No matter, be good, do better than best,

You cannot fail, you cannot rest.

Big girl, please, take the lead for me, handle the house, your brother, please!

Good grief, don’t forget to clean.

Never mind…never mind the turbulent ship, the in—fighting and discord, the tantrums and fits.

Don’t forget to read, to write your words,

And don’t forget to make good scores.

Big girl turns young woman ~

Alone she stands, wondering who will be her man?

Will you dance, will you sing,

Will you hold me close, I need you, please~

I’ve just been terribly misunderstood along the way….

I learned to crawl and walk again,

I read the books, and wrote the words,

I did my best to make good scores,

But you don’t want me?

“I’m sorry, not now~

We danced, we sang, times were fun,

Thanks for the kisses, I’ve got to run”~

Long drive, long night, when she passed away,

The mother of her heart, why could she not stay~

The pain so great, the trials so long, she said,

‘Please help me, move this along’ ~

Young woman, wept, as she held her hand,

Slipping Helen pills was not her plan~

Ease her to heaven, where Granddaddy waits,

To be together, forever, she knew her place~

Long drive, long night, no friends to call~

What just happened cannot bear at all.

I love you, please, I want you to stay~

Can’t we play this game another day?

The walls so dark, the halls so dim,

Loneliness slowly creeping in,

To claim more of this soul alone,

Take it, take me, take me home!

The pills, the drinks, the men, the nights,

That’s all it takes to feel so bright~

To sing, to dance, to have a laugh,

Have a chance at a one night romance~

They call her ‘beauty’, she spins on the floor,

Got some pills, pop some more~

Fall deep to darkness, its warmth inviting,

A place to slumber, so large the price is~

When you lack connection to anyone, anyplace or anything,

And you feel that you have a song to sing,

But who’s there to hear it by the morning light,

To hold her, touch her, treat her right~

The darkness grows bigger for this little girl,

Grown woman now, she does not know the score anymore~

She has been battling against the current for so long,

Her hopes, dreams and best chances gone….gone,

Where did they go?

Why can’t she soar?

Above the pain enduring to find there’s something left, something more~

gabrielle

This is the girl, the lost girl.. one of the photos taken by the professional photographer I met in GA in the 90’s. 23-24 yrs old. The only photo of all the photos taken that I actually still have.

100 Days

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On September 27, 2018 I received my official diagnosis for ASD/Asperger’s, along with PTSD and Panic Disorder. It was not a magic wand, but the validation after 46 years of life and some 32 years or so of looking for an answer, was tremendous for a moment.

Then reality seeped through – this changes nothing. The expectations on my daily performance by those who hold my children have not altered. The compounding effect of too long lost in translation, ignored, and left to struggle through processing it all solo with the myriad of upheavals I’ve faced in the last 41 months since moving here has not diminished. If anything, it has multiplied in the past 100 days.

Just trying to manage the emotions brought on from how things have unfolded, and what is happening to my children while in care, is enough to render me incapacitated beyond breathing. I have seen a pattern emerge, whereby I can be up and active at either work tasks or tending to life tasks but not both – for about 7 hours – and then my body, brain and mind all turn off – shut down. I have to rest, there is no way around it. I accept this about myself now, for now, however it does not minimize the stress felt from the need to perform NT – to function fully – so I can have my children again.

My children have been gone 100 days today. In 6 days comes the one year ‘anniversary’ of the day that perpetuated these 100 days and counting…. I am going to write about that today, in a very transparent way, with the understanding that it is not my daughter that I harbor resentment towards, but the system that failed to hear me, again and again and again and again and again… thus failing all of us.

Since moving here and seeing signs that she definitely needed it, I’ve sought more intensive help for my daughter, but my relentless pursuit to find the help needed kept going and going, without action – as my desperation to get her help was lost in translation and I thereby viewed as unstable and defiant by those I sought the help from. This is an unfortunate but regular ‘trend’ with undiagnosed/misdiagnosed Autistics and the system. My last effort to find help prior to last October’s potentially fatal events, was in April 2017, when I reached out as a parent in need of assistance to the Dept of Children and Families – a case that was started, but when the case worker quit, it sat ignored and untouched by the remaining staff.

October 27, 2017 – It was a Friday. I had taken the car for new tires – an unexpected necessity after driving out of state for Irma compounded by driving over a glass left sitting on the ground behind the car the day prior- and then gone to pick my daughter up from school. En route back to the house, we had a talk about wastefulness, something that was a recurring theme in the house at that time with spoons being thrown away instead of being put into the sink for washing. It was not a lecture, I even attempted a joke about ‘not wasting the spoons that feed us’ much as the farmer’s saying of ‘don’t bite the hand that feeds ya’ goes.

I was unlocking the door when my daughter came up behind me, grabbed the neckline of my t-shirt and ripped/shredded it off my body. I walked in and straight into my bedroom (traditional ‘Florida room’ with glass doors) where I put my purse on my bed and stood there for a minute trying to figure out what just happened and why, and figure out should I step out of the remnants of my shirt or try to pull it over my head. I was also thinking about my son at school, the plans for the evening for the children, and that I had a dinner date – the first in 18 years. tshirt

The first attempt at a date or relationship I had made since my ex-husband.  The first man I had met since my ex husband that had even gotten my attention. 

I am not prone to ‘falling in love’ or ‘relationships’ at all.  A combination of my extreme communication/social deficits with extreme sensory processing issues keeps me from considering men at all. Nevermind and who cares if they  consider me.

I had immediate trust of, a wave of calmness washed over me, when I met him and it is there always with him, an ability to take on the world that terrifies me, because he eases me and that enables me to see the world as a less scary place, thus venturing into it.  

My daughter came in after me and started yelling at me that I did not understand her, and we had a verbal exchange where I kept asking her to leave my space so I could get ready to go get her brother. I tried taking her by her elbow and guiding her towards the glass doors, which is when she backhanded me so hard she slung me into the table that held the TV.  I landed on the floor.  She stared down at me and started stomping me. She put her full 160 pounds into her size 11 shoe and stomped me 7 times in my pelvis nearly direct, a little off to the left.  I got up with the intent to get out, and she threw me into my bed, I stood up she threw me down onto the loveseat at the foot of the bed, I stood up she threw me into the bed again, I stood up and she threw me down onto the floor, I stood up she threw me again into the loveseat, stood up, back to the floor – where I stayed- looking up at her – the thoughts were fast and fierce – why, get to my son, what just happened, this over 10 dollars… It all happened within just mere moments.  I could see in her eyes a look I had seen once before “How are you still alive?”..

She left the room and went to hers, I heard the door slam shut. I kept thinking of my son, I had to get to my son….

I got up slowly and awkwardly, feeling a pain that is not to be put to words flooding my pelvis and belly, the swelling was immense and immediate. I grabbed a bag of frozen peas and shoved them into my jeans, and got myself into the car. Yes, I drove to the school and picked up my son. Each time I moved into or out of the car took more and more effort and time. I came back and sent my son inside – he had no idea what had happened, but he knew something had – I asked him to send his sister out so I could drive her to her therapy appointment. Albeit a little early, minimizing the in and out of the car was a goal in that moment. Upon picking her up after, I then took her to her friend’s house for the weekend (turned out to be just for one night), so I could figure out what to do…..

How to keep my son and myself safe was paramount, how to get her help…

What followed was a night of blackout pain. After fixing my son’s supper and settling him, I layed down to focus on my breathing and try to stay calm. Think.  What do I do?  Who can I trust, who can I call?

Silent, pain filled tears, flowed and I just – hurt! I did not feel that I could call the police, or call anyone for that matter. They had never listened before, and I feared for my son. No friends or family for him to go to when they took me to the hospital…

I feared that the truth would get lost in the facts – and that he would be collateral damage to the system that would not understand my words yet again. If they saw me, and realized that I have no people, then they would put him into foster care! I found myself in and out of consciousness for several hours, and then just passed out til I came to the next morning around 7.

I have no logical explanation how I was able to move the next morning, but I did – very slow with pain in each step. The swelling I toted was about the size of a large grapefruit, and I was solid black from mid stomach to mid thigh, and swelled shut – peeing was a real challenge.  I didn’t have a period or poop much until January 2018.

I carried the t-shirt to the sheriff’s office with the intent of filing a report to validate what happened, because my daughter needed some serious help! I didn’t see the buzzer for after hour help, so I looked up the number and called.  A meeting was arranged and the following morning I talked with a deputy at a nearby coffee shop. He didn’t understand why I had not called 911, even after giving him the history. But – he helped.

 He encouraged me to get to a place I felt safe and to call so deputies could meet and I could file the report, which I did. My daughter was taken in handcuffs from the house later that day, to a psychiatric hospital, where she was to be on a 72-hour hold. After a mere 42 hours, without any family sessions or talking to the doctor, or anyone even asking me ‘what happened’, I was called to come pick her up. On Halloween.  She had ‘met her marks’.

I couldn’t work – and figure out WHAT TO DO, at the same time.  I spent the next 59 days working at getting her into treatment. Easier said than done when you are a poor single parent without fancy insurance… but, she was finally accepted and admitted for inpatient treatment on December 16th.

147 days of inpatient care commenced, whereby the therapist DISREGARDED MY INPUT, completely. She came home on May 14th. We had an agreement, that if she stays within the house boundaries for 30 days then she can have her device back (her phone). She is golden for the most part of those 30 days. On June 15th, I give her back her device and can almost see the switch flip inside of her. We are back to a ‘tug of war’ for the reigns in the house yet again.

On June 17th I have 2 detectives in my living room telling me that on June 9th a female called the facility from the landline modem phone PRETENDING TO BE ME and threatened a bomb on the place. In the interim, I am upturned completely – realizing we have gotten nowhere with the 147 days, and that I am still lost in translation and at a loss for getting appropriate help for my daughter.

In an effort to have something to focus on that I have some control about, I start painting the main living spaces, ceilings and walls. We worked on it all together, the kitchen and dining room areas. As I am working on the living room ceiling the first week in July, I feel a POP – I have re-fractured my pelvis (which I never did get any true medical care for, btw. No money, no insurance).

July 5th, my daughter leaves the house without asking or my knowing it. About 930 that evening, she barrels through the back door that is the door off of my bedroom, and sends me up to the ceiling! I beg her to go to bed, to leave my space, so I can calm down (if that was even possible). It took about a week to recover from that moment – and the next day, July 13th, my kids are taken from me – again.

100 days has past now. I have done all that was required of me at this point. The psychiatrist sees zero reason from a psychiatric perspective that I should not have my children.

I am not psychiatrically challenged to have my children.

And, as I sit here trying to make any sense of any of it, I do feel more persecuted than anything else – it will be potentially April 2019 before my children are returned, pending my ability to regroup/reground/stabilize income somehow and do it on my own. But – the persecutory feelings are a long time in the making (that btw, is an Aspien trait), as I have said I sought help from two different states, and both ignored me. One did not investigate any of the reports filed on domestic battery (common for Autistics to not be believed by authorities, as the NT abuser has the social finesse to spin things, which is exactly what mine did) and the other one left my file begging for help sitting collecting dust for 6 months.

I want to do all those things – in my mind, heart, soul – I truly do, and I do get up each day to work at doing them.

I struggle. HARD. And it seems endless, the struggle. Recovering from extended burnout on one’s own is a daunting, arduous, painstakingly slow task. The required trusted, committed connections of supportive friends, a partner, family – I am missing those. Not pity, just the facts as they are.

I have attempted to connect with the locals a few times, and each time I see how very not from this planet I really am.

Trusted real world connections – the people that help the autistic, support and encourage them through the trials of burnout recovery, are necessary.

The autistic does not always see, or know, what they need in the moment. Untethered, as it were – without a trusted person around to keep one grounded, hold the kite string, hugs, compassion, understanding after processing all day at the end of the day and listen/translate the world  – I wonder will I recover in time.

Will I get back to being able to do more than the bare basics of breathing and staring at the neighbor’s flowers, since the overload when I turn my attention to the day at hand comes at me like a tsunami wave – pushing me back to my safety zone.

Not giving up just yet – but I am failing to find the way to do what is expected with the cards dealt, and I don’t play poker! I know the odds are not good, for an adult autistic with severe isolation. The suicide rate among adults with Asperger’s/ASD is ten times higher compared to the NT adult population. No, I am not trying to kill myself. But I am saying that I GET IT, and I am whirring to find the solution to this puzzle. For our family.

The date never happened.

Links Included Above:

  1. https://medium.com/the-establishment/we-need-to-talk-about-the-domestic-abuse-of-autistic-adults-5df294504a13
  2. https://www.psychologytoday.com/us/blog/aspergers-diary/201011/the-pain-isolation-asperger-s-and-suicide
  3. https://psychcentral.com/news/2014/10/13/suicidal-thoughts-10-times-more-likely-in-adults-with-aspergers/76016.html

 

Double Standard World

Feels like my brain is about to overheat, the wheels are spinning so swiftly, the balls bouncing quite loudly and fiercely, as my sweet neurodiverse processors attempt to …. Work this crap out. Process, understand it – sort it – on my own.

I’m still working through what I relate to being phase 2 autistic burnout, as explained in this article from the Autistic Advocate here. I could justifiably put that definition over more than the past 39 months, but we’ll just stay focused on one state at a time as that’s the limit I can handle.

As I was saying, it feels like my brain is about to overheat…..
We’re on day 42 of separation as the wheels of justice turn and the system is actually finding it needs a new carburetor as application to our little family has revealed a lot of rusty parts. Day 42… headed to see the judge on Monday. Day in the life here, I have been pushing myself to regroup, regain some physical strength and mental focus, so I can produce viable and billable work for the company I work for – It’s been a tedious process facilitating any sort of return from this level of burnout – which I do not feel anyone around me other than D. gets or truly believes is happening. Besides the point, I push myself each day.

Today, started out fairly okay and I had our weekly visit with my children to look forward to this afternoon. D and I had our morning chat, I got organized to pick up where I needed to with the task I started yesterday – and then the phone rang.
With the children in state care, I rather have to answer the phone as I am never sure when someone needs to ask a question or direct me somehow. Today, it was an interview phone assessment, took about 40 minutes. No sooner had that finished, the phone rang again – my attorney going over things for Monday. There’s some bits of this which I cannot fully disclose or discuss at the moment, but to say that ghosts from Christmas past are afoot – ghosts that harbor resentments large and wield a hefty vengeance. I have moved and relocated us – several times – with very good reason. It’s another ring added, a ring of terror not describable. And there is very little to be done to throw a Harry Potter cloak of invisibility over things while they are – allegedly – being sorted out for the best to help everyone here…. Ehem.

42 days. I am complying with the requests on me. Jumping through the hoops. I am taking the classes, and glad to have them. I have filled out and filed all paperwork needed for their base evaluations. There problem lies in finding a provider to oversee/perform the ASD evaluation for me, an adult. Huh? Yes, I already had done the homework and I sent that 411 along – I call bullshit on that, it really is a matter almost of ‘too many cooks in the kitchen’. Too many parts and they are not all working together. I think this is where the director throws the script in the air and shouts ‘REWRITE!’.

Have a laugh, please… but in all seriousness, the lives and futures of three humans are in the hot seat at the moment over ‘who is going to pay for this’ and we are talking about a couple conversations and a 70 question assessment, basically. There are others, face recognition for ‘theory of mind’ testing and a lot of tests, it can be 500 to 5k.
It’s just so freaking sad, to me. I read the daily struggles and testimonies of fellow Aspiens, and some are in relationships and some are in jobs, some have the lot of family, spouse, job. We all struggle with sensory overload and sensory processing, differently and at different levels. Some that are fully equipped with what life has to offer, struggle nearly as bad as I do. Some that are set up in life as I am, with next to no humans or NO humans at all and disenfranchised from core family, are happy as larks. If you have met one person with Asperger’s Syndrome, you have met one person with Asperger’s Syndrome as the saying is in the autistic community. This is in part why I disagree with Asperger’s Syndrome being removed from our books. High Functioning does not have anything to do with the level/severity of traits for the individual. We still have our vocabulary, but day to day functioning in the real world, socializing, managing obstacles and upheavals, coping and regrouping our processes, that all varies. Apologies, I digressed.. but the empath in me does feel deep pain on behalf of these folks, I just so much understand it all.

When you add in the layers of domestic abuse, starting with my core family, and the lot of it with my ex in prison… even a neurotypical would be lost in these same circumstances I would think. But neurotypical or neurodiverse, the question remains the same at the end of the (my) day – How- after decades of instability, misunderstanding of self and being overwhelmed/afraid by and of the world, and then threats to one’s life, is one to to be stable of mind, if they never feel safe?

How is a single mother, afraid for her own safety, insecure in the world as it stands for whatever reasons, alone on her own with only herself to process and do it all, supposed to be a strong cornerstone for her family if she herself cannot feel safe?

Please, someone answer that question!

Please, someone tell me viably,  with practical application, how this is supposed to work. No one can, no one I am ‘working with’ can actually relate fully to these circumstances. No one wants to relate to these circumstances! How can the world… how can the system… how can any human….. Ask of another human to do what they themselves cannot imagine doing, enduring, living through themselves?

I get it now and again, a message from a NT friend saying, “I just do not know how you are coping with all that is happening”. Guess what I say… ‘I’M NOT’. And they fall silent.

The normal world expects….demands being accommodated.  But in reality, could they do it? Not this. 

So my day today, a day in the life: I got up with the intent of working a good 5 hours before the scheduled visit with my children. I had my talk with D and we planned things out, I got in that mindset, I sat down and was working and then the phone rang. First was the unexpected phone interview, then the attorney, then the visit with my children, then the notification that there was no way to throw a blanket over or seal the records of these case proceedings, so I then found myself sitting in the parking lot from leaving the visit and my thought – “Oh yea gotta go home and jump back on the work wagon after this!”. And yep… most neurotypical people can easily compartmentalize and do that, switch gears on command – and that is what the world expects – but not us Aspies. We do NOT and I say this clearly now – have strong central cognitive coherence. We do not go from one thing to another and transition back to number one smoothly. Some struggle more than others…. I would fall in the ‘more’ category, I also have a closed head injury going on 42 years now that exacerbates the issue no doubt.

It’s after 9 pm. I have fought the idea of eating something, finally ordered a pizza. I have fought the idea of going out for margaritas, because I am here that lost trying to process on my own and it is that quiet. I settled for some pint size IPA … IDK, I don’t normally drink. I should be sitting here doing my billable work, it has to be done. NT folks would be burning the midnight oil no real issues other than maybe hunger and physical exhaustion… that is what is expected. Get. It. Done.  I have done that – did that night after night with this work back in Alabama.

Been on this train with the ex that wants me dead for 18 years… so idk what else to tell ya. Who wants to come settle the cartwheeling overheating processors in my brain? Not settle for just anyone – has to be someone I feel safe around, calm with – someone who understand me enough to make the world less terrifying, make it more understandable to me.

Being a single mother is hard. Being a single mother unaware she herself is autistic and she herself trying for decades to push herself a trapezoid into a square hole… to do right by her kids, to meet expectations, to live…. And to fail day in and day out, day in and day out, no matter what, day in and day out… day in and day out…. To be ignored when seeking help, to be labelled time and again as crazy and outcast, discarded, ignored… abandoned…only trying to do right by the kids, only trying to fix things for them and hopefully others and then….. To be here.

I do not know. What would you do? Please do tell… please do explain.

Double edged, double standard world.. Fit in, or fail. Do as expected, or lose. Meet standards, or be alone.

Angel love and peace, I gotta jet. Cold beverage and cooled pizza await. And further processing insanity… really, is this supposed to produce sunshine and rainbows?

Path to Autistic Burnout

I’ve started several times this week to compose #3, at the urging of my person to continue to online journal for my own clarity and healing, and to help bring a raw education to these topics – I have written three or four different entries in my mind, late at night whilst trying to be ‘at peace’ amidst the bouncing bouncing bouncing balls of thoughts in my head.  However, each time I have sat to write, I have found myself simply unable – Today I am doing this for my person –   He has bore witness to the daily happenings as they have unfolded, turned, twisted and blown up – the one person in this state I fully trust at the moment, and one I am thankful daily that the universe brought (back) around.  He’s a true Earth Angel, an older brother sort, and I believe it’s not the first life we have met in, as I have felt that connection with him always.

I have nothing left of value to lose in baring all – my children are taken – for an indefinite period of time.  I am going to dig into my old toolbox of interests, and try to use my words to bring some light to the real challenges of being a single mother, domestic violence survivor,  late diagnosed with Asperger’s Syndrome.

Until this puzzle is solved, I am on a mission to find the answers. For my children and our family – yes. But for a bigger change, because this crap should not have ever happened and should never ever happen again.

One thing I collect, you might say – are facts.  Bits of information, from here and from there, and it all gets stored away by the ‘little guy upstairs’ (as I referenced him since about 15 years old in a world way before ‘Google’).  Like magic the patterns, the connections start – the puzzle begins to take shape – I see parallels and connections between bits in rapid fire succession, on multiple levels/planes/realms and suddenly a mass spider web of connections forms, then I see – and at this point is where I stutter, falter and sputter to a stop because finding the words to explain what I see – without folks looking at me like I have three heads and a clown nose in the middle of my forehead – generally proves pointlessly exhausting!  

I joined a support group for Asperger’s, and I have taken in a lot there.  What I find is that I am definitely NOT alone. It tears at my soul, I feel their pain as it’s my own, as I relate to, understand, and just all around feel for them and their daily struggles because they are mine, too.  

There are so many of us, around my age of 46 and older, both male and female, who are finding out just now that we have Asperger’s Syndrome.  (Yes – I am going to keep calling it that.  The World Health Organization has not changed its name, only here in the USA has it shifted.  I disagree with the change, and will ramble about that another day).  It’s astounding really – across all continents, socio-economic levels, without bias to race – a mass populace of us – figuring it out after half a lifetime has passed us already.  

Many – not just me – have been feeling lost to translation for far too long, lost to the world at large – misunderstood, overwhelmed, taken advantage of, discarded in many ways – misdiagnosed or not diagnosed at all, left in this whirlwind without any understanding as to why – until now.  And – there is a lot of JOY, and “YES! I get it!” There is a lot of sorrow, deep sadness, feeling of loss – loss of time, loss of a life of time.

There is then also frustration, and speaking for myself – given the current reality that my children are in foster care because of the state I have come to find myself- feeling victimized.  I have been seeking assistance, guidance, help for a long time (even before children, decades ago! I was in therapy at 15, most of my mid to late 20’s and into my 30’s always with the same thing: I do not fit, the world scares and overwhelms me, where do I belong, where is my home planet this could not possibly be it..) and from any available avenue – but am now the one ‘to blame’ for these failings. That’s how I process it.

I have cried exhausted incoherent words to D time and again, not understanding myself why it feels like my brain has simply turned off, why things I could do last month or a few months back all of a sudden – are a real struggle or impossible to tackle.  I have said again and again, daily some weeks – I just don’t’ understand or know what is wrong with me.  It has come in waves, first at a slow rate but definitely increased in frequency and duration over time until I am where I am now – Too exhausted to engage even in written form – I am not engaging on social media in groups, have not posted in weeks, because I can’t engage – even though I may want to, the energy to do it simply does not exist.  

This week – marks 7 years since I got into my Oscar car and left my ex husband (and temporarily, my children) to gain solid ground once and for all after too many years of cyclic abuse and leaving but not being able to ‘complete the mission’ as it were of getting life back together for my children.  August 10, 2011 was my daughter’s 1st day of 2nd grade.  I took her picture that morning.  I did not know it was the last photo of her – full of childhood innocence, wonder, and awe – that would be taken of her.  That I would take of her.  I did NOT know…. I would give anything to be able to go back to that day.  HUG her  – look into her innocent eyes, see that sweet pure smile – untarnished, unbroken… Keep her UNBROKEN.

August 15, 2011…. To this day, I still abhor myself for that choice. It has led us down the path we are on now, and no matter the ‘spin’ put on things, I just hate myself for not taking the children with me. I believed they were safe. I believed they were better off in familiar territory while I took a short few months to regroup and get myself together cognitively, physically, mentally – long-term domestic violence diminishes and can immobilize a person – I wanted nothing more than to be a good Mom for them.  

It’s been … a path I would not wish upon my worst enemy. One trauma leading to the next, and I have asked, begged, cried, shouted, pled for assistance or guidance or advice or anything available to help get us there and been misunderstood and/or disregarded over and over again. Even by the people wearing the badges, holding the certifications, with the education and degrees, who are supposed to want to find the answers and help. It’s a lot…. A lot of pain, a lot of overwhelming sadness, I still feel it all – theirs, mine and ours.  It’s all seemed so senseless, without any good reason.

Please – let there be GOOD REASON for the suffering of my children and myself.  Please let the right person see this and realize – No, this should never happen to a family!  Not my family, not the next family. See this and pick it apart and FIX THE FUCKING SYSTEM.

More exhausted, too much to be attempting writing this but I am and I will – if it is all that I do today.  I have been looking for the answers – to finish the puzzle – starting with this total inability to function.  I must be crazy? Lazy? Depressed?

No.  There is a name for it.  Autistic Burnout.  It’s not ‘recognized’ by the medical profession (go figure!) but is very real to anyone with autism.  It’s like a neurotypical nervous breakdown on speed. It’s unexplainable, unrelatable to the NT world, but I have been trying to express it for a very long time now.  Many times. The many quotes I will use below (since I am in full on burnout, best I find the words built out and save a few drops of energy imho) can be found here in a blog by fellow Aspie, Ryan Boren.

Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…

Looking back over my decades of living, I see the burnouts.  I see them particularly beginning as I began college at 18.  The never ending headache of 9 months, leading to ‘leaving the world behind’ to find a new one – twice – before dropping out of college.  When catapulted into full time motherhood concurrently with full time provider (get to work, pay the bills!) I see it over and over and over again.  Add domestic violence concurrently, and social stigmatization (may as well of being wearing a scarlet letter), what could be the end result exactly aside from total meltdown, shutdown, burnout????

Had I known of my condition, then I may have known what play book to get at the bookstore.  What the hell am I supposed to be doing exactly?  How?

Source: An Autistic Burnout – The Autistic Advocate

Autistic Burnout is an accumulation of years of trying to appear normal and cope as an Neurotypical (NT). The strain and drain of it suddenly becomes too much and an autistic person falls apart. All autistic symptoms get worse.

Basically, the higher functioning you are, the more others expect of you and also, the more you push yourself. You have an invisible disability, you look normal and have no apparent physical difference. So why can’t you behave and carry on like everyone else? Sure, everyone gets tired, sure they also can get burnout from pushing themselves too hard. But the difference is this: we get it from just existing in a neurotypical world, a world that doesn’t accept our differences or make allowances for them. Mental health issues such as anxiety and depression are greater in high-functioning autistics, because of trying to fit in and finding it so difficult. Because we are acutely aware of our differences and our failings, but we are just as affected by them as lower-functioning autistics. So we kind of have the rawest deal.

This is so true.  The answer to Autistic Burnout – and what the NT world expect- do not jive.  We are ‘cats’ and they want us to ‘bark’.  We are expected to conform to, to work within, only their rules.  If we stop that nonsense, and focus on doing things at our speed, working within our trait load, then we are ‘bad, defiant, lazy, difficult….’…

It’s apparent to me that, though the ‘system’ says they accept diversity, including neuro diversities, they actually are not equipped to understand what that means exactly or how it translates to daily life.  Folks, you can accept that I am a trapezoid but are still demanding that I fit through your square holes! 

It’s a disservice to autistic people, to any diverse populace really, to say “We accept you, now this is what you have to do, these are the steps you have to take, to fit into OUR world”. – my words.

When you hit burnout, you can take a long time to recover.  Even one stressful day, for someone on the spectrum can mean days or even longer, of hiding away to recover afterwards.  So imagine what impact it has if you try day after day to continue living at a level, which to others is ordinary but to you is a massive challenge.  And once you burnout, your coping capacity is diminished. That means, even when you recover, if it happens again, it can happen quicker and take less to provoke it.

Imagine – day in and day out – being thrown off course, tossed a new set of problems or tossed yourself and taken down physically, but still trying to stay on top of things for the well being of your children and yourself, and trying to keep it together to do your paying work, and keep it together to talk to roofer and AC contractors, and express the gravity of, and hazard implications, to your 78 year old, retired, absentee homeowner father, and juggling the daily demands of home and life.. an ongoing, never ending saga spanning 38 months…

I have been so exhausted – at one point, in Sept 2016 – I thought “been in chronic, pervasive stress with high anxiety and shifting challenges for so long, I think I may have chronic adrenal fatigue”.  I looked into it, did my research thoroughly, and yes – the physical symptoms I had matched up with adrenal fatigue. I even went and had some blood work done (which did not indicate adrenal fatigue), spoke with a physician’s assistant, who wanted to put me on Valium – which I refused.  I tell that story, because it came back to mind as I read this:

Suzanne C. Lawton refers to Aspie burnout as The Asperger Middle-Age Burnout in her book Asperger Syndrome: Natural Steps Toward a Better Life. On page 33 it says:

“She had noted this same behavior and attributed it to adrenal exhaustion from years of pumping out high levels of epinephrine from prolonged severe anxiety. Not only were these AS people dealing with their regular levels of anxiety, but they were also working extremely hard to maintain a façade of normalcy.”

You can think it’s simple: Get up, take care of the day, be flexible, adjust work schedule to spend hours doing other things, have energy left to do the work that pays the bills and sort the paperwork, tend the chores, fix the house, cook supper, help with homework,….. It is NOT.  I have done it now for years on end and the exhaustion I feel, where I am at – the level of non functioning I find myself at- is NOT a game. It is a SCARY place to find oneself with only oneself to regulate oneself through unfamiliar, unscripted territory.  

Although a NT person faced with the same set of rolling challenges over the same amount of time may compartmentalize and handle as a NT and come through mostly unscathed, truly it would still be a challenge. Truly, no one I know or have known or even just chatted it up with and tried to convey the daily unpredictability and instability of life as it has unfolded here to, can grasp the totality of it all.  Yet – I stand judged and persecuted for failing – when I did my best to be NT and play the game- now I know that I didn’t even know the name of the game being played, let alone the rules to follow.

Seven years.  That’s 50% of my daughter’s life, and nearly ⅔’s of my son’s.  That’s too much time, too much trauma, too much struggle, please let their losses – COUNT.  Let this crap we go through now MAKE A CHANGE for the BETTER somehow. I will suffer this pain, I will offer what’s left of myself – 111 pounds, not worth starting the bbq for – at this point, from this depth of inexplicable exhaustion, I would gladly hand it over IF it would HEAL things not just for my children but systematically… so the next family, and the many more beyond… will not suffer an endless, needless traumatic path flawed by the signage of a broken system.  Angel love and peace over all ~ Til next time.

“Do I have to stand in the street naked to get my kids some help?!?”

Yes, I said that.  Yep. Sure did, at the end of an IEP meeting.   I do not remember saying it exactly, but I am told that I did, and I know that I have thought it many times. I was so rattled by the conversation and the many others in the room, coming at me with questions and comments faster than I could process or respond (I lack what I refer to as REAL TIME RESPONSIVENESS) and being totally misunderstood the entire time, worried also about my son who was not feeling well and home sleeping during the meeting, that – YES, I said that.  But what was my neurodiverse Aspien brain trying to convey in that totally inappropriate comment? More than anyone in that room realized, and more than you are thinking at this moment as you read these ramblings.

On the offset, it does mean that I have gone every conventional route possible for year after year now and gotten nowhere, and I am both out of options and exhausted as only an Autistic could be –  having put forth a seemingly bottomless amount of effort and energies into trying to get the right help so one little family can turn the corner and start doing life on solid ground again.

It is also a statement on my own self esteem (seriously lack of it!) and self perception.  With nearly every person that I have cared for deeply, in any regard, I have found myself betrayed – found that I was used for their end, or in some capacity to meet their needs, or to get something they needed.  As I am now learning, the depth of bonds that I form with these individuals, whether it is mutual is not a point, the level of commitment and care and concern, the depth of love – cannot be put to words exactly, is an aspie trait (particularly for women).  This bond is forged on a myriad of planes, and the loss always brings me to the depths of darkness. The ‘why’s’ begin to bounce in my head, while there’s a fiery hot, searing pain taking over my heart and consuming my spirit. I have to make sense of, understand the betrayal… understand what did I do wrong, try to fix things sometimes.. I beat myself up for being dumb, too trusting… incapable of communicating effectively, that my very genuine desire for that person … isn’t enough, the rest matters.  The communication, the ability to understand things, that I do not.

There does not exist any bond or  connection, or sense of safety or peace, or comfort from, any of those that are my biological ‘family’.   Never has been, with the exception of one, and she has long passed. I feel I have been the greatest disappointment ever to my parental units, and my brother hasn’t talked to me since my son was 7 months old.  Some that I have had connection to for years, I have reached out to over the course of these current circumstances unfolding, to get what was no more than lip service.  Now those folks just don’t bother – I am not one that people want to be around, I never have been. I am not one people want to include, I am the one that is just here until someone needs something and I can do it.  

That is honestly how I see myself, how I feel – and that I am here processing things totally alone – always – is evidence enough for me that I am here as a servant to this screwy planet, and at the end of the day get to face the scary world, the darkness alone.  I do not have real life, in person people any more. I cannot seem to make them either, and that I can say goes to the long term, endlessly devastating, betrayals over the course of this life. It’s been a series of bullying, being taken advantage of, beaten upon, wanted only for what I can do for someone with my mind or my body, betrayals of the mind and heart too many times…from being too trusting, too willing to want to help and the reason for that – because at the core I am still looking for some acceptance.  To be included. To be worthy of love. But my Aspie gets in the way…. So I am perpetually alone. LONELY. Depressed beyond words.

I do realize, the more I read, that I have traits to the extreme.  I do. I can’t lie, so I may as well just come out with it, right? Given the total lack of community, support, family, lack of a partner, not having a trusted circle of friends, and the level of traits that I acknowledge in myself – I do not see the end of this with my children being some great success story.  I just don’t. Now, the negative, doomsday thinking – that is an aspie trait – but even in my logical mind, I don’t see this ‘working’ as so many think that it should. Single parents at this level of traits only succeed with a trusted circle of people around that love accept and help them. That’s the consensus.  

So many think that I should just simply accept, or rise above, this deep grief stricken sadness that pervades my soul and has for most of my adult life.  I guess that is easy for neurotypical people? Just rise up, greet the day, get ‘er done…. It’s no big deal.

This gets lost in translation and is unrelatable so much that I have given up trying to convey what it has done to my soul and still… fail.  So I say this: Loneliness is the number one silent killer. Humans are not meant to be islands all to themselves. My level of communication and social fallacies…. And actual fear and distrust of people in general now from being misunderstood and then ignored for so long, has me not wanting to leave the house, not wanting to even go to the mailbox until after dark…. Add in my true inability to conquer normal daily tasks like a normal adult without a tremendous amount of energetic effort followed by an exhaustion not explainable to the normal world at large (please do not ask me to go to the grocery store), that brings on massive anxiety…. How am I ever going to be able to be ‘good’ for my children in the day to day?  The odds, with my level of traits, are not good from what I read.

There was a time, for a while, that I had that ‘person’.  First he was just a friend, that always seemed to understand me, or worked hard to understand me – and would hang, let me vent – help me to PROCESS and see things more clearly… calm the racquet balls!  He was my translator – he translated the world to me and me to the world. It was great, at the end of the day, to have someone I trusted, had ‘calm’ wash over me when in their presence, to go over things with – helped to let them go, helped to be able to sleep at night and not have the balls bouncing off the walls of the internal racket ball court.  So freaking loud!  Helped to stop the brain going 100% 24/7.

Turns out Aspie women attract cluster B personality types. We are too trusting, we are easy targets, and that person turned out to be sick on his own, a predator, a pedophile.

The more I sit with things now, the more I remember my 20’s.  When I had only my cats. I had to have them with me at college to cope, they went with me to California, to Birmingham, and all over.  Not friends. Not partners.

I don’t recall a lot of my 20’s, because the heaviness of being misunderstood, lost and alone then nearly crushed me, and I spent too much time drinking.  Too much time trying to numb myself. Too much time acting wildly, doing things under the influence of alcohol that I could never conceive of sober, let alone have the courage to act upon – just trying to be accepted, to fit in and do as the other 20 somethings were doing, to matter to someone, to be loved.  I can’t do that now, the drinking – kidney damage from the incident in October, and I am not the robust, young, unbeaten up person I was in my 20’s. But in the overall scheme of things – it is the same. I sit, with the cats. And myself. Feeling more than a little lost.

Lost in Translation

I’m sure everyone is wondering about the ping pong balls, and we will get to that in time.  For now, Hi there…. I’m ME, a 46 year old single mother finding out that I have Asperger’s Syndrome (High Functioning Autism, for the “politically correct”).  I love to write creatively, but I am not going to do that tonight.  I am not out for a Pulitzer, or any high 5’s for a job well written.  I’m writing this as a means of discharge, as there is a shit ton going on and I am here completely surrounded by and thus processing with just myself.  Quite honestly, it’s exhausting answering and discussing this over and over and over again….

BTW, this is not being written for young eyes to see.  Some would say that I should come with a warning, and definitely anything I write at this point in time is not going to be filtered or edited for content.

About those ping pong balls now.  Consider that a visual of my brain at any moment in time, especially nowadays and to be honest probably for most of my life.  “A VW with a Porsche engine” as my Granddaddy described.  Why I have pervasive insomnia, why I am writing this blog instead of focused on paying work tasks long overdue, why I panic and retreat to stare endlessly at the walls or the flowers blooming next door instead of sorting the piles of paperwork and doing the many, many things pending on my ‘to do’ list.  Or work.  Right now, I am in the biggest freakin’ mess of a lifetime, and it is because of those damn ping pong balls.  They morph into racket balls days like today.  LOUD.  FAST.  UNSTOPPING. Allow me some grace and I’ll try to explain.

I’m a domestic violence survivor, and to one degree or another so are my children.  My ex husband is in prison for a felony A conviction, a story I won’t be sharing with you tonight.  The children and I have been on a whirlwind, trauma affected, journey, for too many years now.  He went away in summer of 2013, after over a year of fighting a system and community that did not want to accept the truths presented to them by me – misunderstood, lacking social agility and communication acumen in the real world, just trying to fix things for her kids and ‘do life’ with some semblance of peace, structure, and harmony ME – who took yet another plunge into the normal world seeking help.

I lost my children for several months, NOT heard by those there to serve, protect and help.  Seems to be a trend I am now learning of, as I read “Perhaps most worrying of all was the third theme that emerged: abuse that was being reported went unnoticed, overlooked, or not taken seriously — even in one case where it was reported to the police. Many thought this was partly due to the relatively superior ability of the non-autistic abuser to subtly control the wider public perception of the relationship, with abusers often using their superior social fluency to make the abuse seem trivial or nonexistent”. 

WTF!

This is what happened to me, over and over again.  Seven times by my ex and if one is being honest, several times with my daughter since moving.  Then the worst imaginable happened and we are where we are now.  Never believed, perceivably mocked for reporting the abuse, given little regard by the system there to help.  I tried.  Again and again, I tried to leave and build a life for my child.. and then my children, when my son came along.

We moved – a lot.  Both before the criminal trial in 2013, and after.  The ‘after’ moves comprised 10 moves across 3 states in 3 years, landing us where we are now about 38 months ago.  We are all shaken, we all lost everything -materially, “family”, community, familiarity, some friends.  The moving was for safety and then for necessity.  On a single parent, no child support or family support, budget – it’s only in coming to live in a family owned home that we have a roof over our heads.  Thankfully, now it is a NEW roof (a story for another time) after a near 2 year battle to make it happen.   Structurally sound (mostly) – for the kids.  A place to put down roots and to watch them spread, a place to really call home.  A real neighborhood, with streets to ride bikes upon.  That’s what I have been after for them, so they can stop – breathe – and get back to being kids.  I thought we would move here, find some second hand furniture, paint and freshen up things, and go to the beach!  Regroup, rebuild our lives, return to peace and find healing.

It’s not quite worked out that way.  The house was ashambles when we arrived, and that has been an ever present stressor and factor, ongoing to a point as I write this, yes.  My sweet daughter and son, both with juvenile ptsd and having dealt with more than any children should in any amount of time – Gosh, I just love them both so much!  Within weeks of getting here though, things starting unraveling with my daughter.  I worked to  get her appropriate help within the avenues available to me.  It has been a haunty endeavor, with a couple steps forward and then a dozen backwards.  I don’t want to write in any way that shames her, I do love her and still now do not want anything more than to find her the appropriate help so she can be restored – soul, heart and mind – which she fully deserves.  The power play, the severed dynamic between us, and the equally strong desire and need to be present for my son (who is also ASD), has torn me into shreds over the past 38 months.  I understand it more now, the struggles with parenting a NT but emotionally traumatized child and an ASD child as an Aspien adult (with PTSD and Panic Disorder, too), as I am trying to learn a new truth through the lense of Asperger’s Syndrome.

Parents with Aspergers exhibit either minor and/or significant problems in their parenting. Problems experienced by moms and dads who meet most or all of the diagnostic criteria for Aspergers are significant and yet little understood in the child welfare community. This is in part because the able autistic parent community is invisibly disabled.

Problems in parenting are linked directly to the core neuro-cognitive clinical features of Aspergers itself, namely weak central coherence, poor cognitive shifting & lack of a theory of mind.”

https://www.theneurotypical.com/parents-with-aspergers.html

Another interesting article states further problems with women yet officially diagnosed and their run-ins and problems with the system.

“Autistic women are, however, still likely to remain undiagnosed. A survey by the National Autistic Society found that 42% of females have been misdiagnosed, compared with 30% of males, while twice as many women were undiagnosed compared with men (10% compared with 5%).But experts are warning that these mothers risk having their children forcibly adopted in the fight to get them diagnosed and supported, as social workers misinterpret the parent’s autistic traits as indicating potential harm to the child.“Their own autism, often undiagnosed, means they put professionals’ backs up and can be accused of causing or fabricating their children’s condition,” said Gould.” These are very worrying statistics,” said Baron-Cohen. “Whether these mothers have a formal diagnosis or not, if a lot of these mothers who have autistic children have undiagnosed autism themselves, they might struggle with communication with professionals and appear confrontational rather than diplomatic. The risk is that social services see this as a difficult mother rather than recognising her communication issues are a part of her own disability.” More here.

Definitely I have been misunderstood by the child welfare community, in the state that re-traumatized my children and myself after the arrest and indictment of my ex husband, and definitely by the community and service providers that I have sought help from here in our new place.  Perhaps why I fight yet again, for my children, who are – again – in foster care.  Definitely 100% without a doubt – me.  I have felt, personally, as a one armed Captain, trying to navigate a ship, that is attached to a rollercoaster, atop a tsunami wave, as I have worked to remediate this home, settle the family into a new place, learn where things are in this new place, continue to work to earn enough to keep the bills paid…. all coming at me rapid fire, without any order, at the same time. Without viable help, though it has been sought from every avenue, and a few new avenues invented in an effort to make headway, without success.

Definitely I am 100% Aspie.  Textbook, some would say.  In 1994, when Asperger’s was added officially to the DSM-IV, I was 22.  In college.  Studying psychology and theater.  Without but a couple friends…. well, really just one – Sue.  Totally misunderstood by my parents for my line of study, for a lot of things.  Completely depressed.

I remember telling Sue mid term fall 1993, that I felt that I had to either disappear, since I felt like I was from another planet, or kill myself.  So fucking LOST.  I didn’t kill myself… I did think about it and that is true, and typical of Aspie girls around that age.  I left college, boarded a plane January 1994, took off to California.  Where I was further misunderstood, lost the job I had and the place I had to live in the same day, and ended up on a stage at City Limits, stripping.  Determined not to return to the world that had turned its back on me, forgotten me, misunderstood and thus penalized me. Totally fucking Aspie.

Yes, I await a means to get an official diagnosis.  It’s a matter of being a poor single Mom, making “too much” (19k last year – puhleeeese!) for Medicaid, and not enough to afford private insurance.  I have sought out and found the official test online however – The RAADS-R…. scored a 199.  Check it out below.  Take it yourself if you want.  Make an account, answer the defining questions, and then go for it.   Would love to hear about your results.

RAAD R

Looking at my life through this new lense, I am finding some bits of self acceptance and answering WHY to many, many previously unanswered moments…gives me some peace.
I haven’t a clue “who I am” outside the tasks I perform, and I never have.
I shake my hands, at my sides mostly, twisting at the wrists very fast back n forth. Play with my hair. Flick and bite my nails. The hands, I have forced control over except when totally alone. I’ll clench them otherwise. These behaviors I got grief about as a little girl, 3 yrs old, and onward. Not ladylike, Sarah!  It’s called ‘stimming’ btw..
I am a social nightmare, I have said going on over two decades now that I would confuse Mother Theresa and send her to the bar looking for drinks… I don’t mean to.  I DO care, way too much, about those that come into my life.  I am way too trusting, probably more than a bit gullible, a lot aloof, with a heart that will stop traffic to rescue a stranger’s adirondack chairs (12 of them!) and piss off every driver on a Saturday afternoon, among many other things.  As I now, again, work to rescue my children.
I do want to fix things and to help, and I am just one person with two hands – I do get way overwhelmed, and can remember every stage of life finding myself melting down after a day of interaction with NT people, or out and about doing ‘normal’ things.  A job in an office. Going to run errands on a Saturday.  Now I try to step away and ‘turtle’, as I like to call it.  I am trying to figure out “who am I”, because I really do not know beyond the core of my heart – deepest ever desire to fix things, to HELP, to change things for the better, for everyone.  Maybe my transparent mess of words will resonate with and help someone down the road.  Maybe this systemic failure to my little family will fix things so other families like ours get help instead of perpetual harm.  I have filled a series of roles in my life, adapted to what was expected of me, but as for being an ‘individual’, that I have not done probably since I stepped on that airplane, January 28, 1994.
“It’s only after a diagnosis that a woman may ask, “Which parts of myself are an act and which parts of me have been hidden? What do I have that’s valuable inside myself that can’t be expressed because I’m constantly and automatically camouflaging my autistic traits?,” Igelström says. “None of those questions can be processed without first getting diagnosed, or at least [self-identifying], and then replaying the past with this new insight.” Read more here.

 

Well, that’s it for the first edition of my ramblings.  Maybe getting some of this out will help sleep to come, help focus to return!  Til next time, Angel Love and Peace to each of you.