Do as Monkey Say, Not as Monkey Does

Greetings.  Thank you, Anywhere County USA!  

You have activated the raging 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.  In daily 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 tangible help in 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….

“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 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. 

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 probably thinking at this moment.

On the offset, it does mean that I have gone every conventional route possible for year after year now and gotten nowhere, see that I am both out of options and exhausted as only an Autistic could be –  from putting forth a seemingly bottomless amount of effort and energies into working 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 (serious lack of it!) and self perception.  I am but an object.  If I have to abject myself as one to find a helpful end for us – well it is in the history.

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.  A dominant pattern repeated throughout the decades.

As I am now learning, the depth of bonds that I form with these individuals, the depth of commitment, care and concern, the depth of authentic love – cannot be articulated 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.  There have been many such of these losses since our move, as I have reached out in desperation for any kind of tangible support so that I could be ‘Mom’ to my children.

The ‘why’s, what’s and how’s’ begin to bounce in my head, while there’s a fiery hot, searing pain taking over my heart and blanketing my spirit. I have to make sense of, understand the betrayal… understand why did I not understand what they intendedwhat did I do wrong, how can I fix work to fix things..

I beat myself up for being slow, too trusting and incapable of communicating effectively.  The communication, the ability to understand things that I do not.  The ability to grasp social and verbal cues – I have it but not in real time.  Maybe next week, or month, I will ‘get’ the joke, understand what was intended.

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, invite to the party.  I am the one that is just here.  

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 pawn 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 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 and inclusion on this planet.  To be worthy of love. But my Aspie gets in the way…. So I am perpetually alone, scared more than not. Depressed beyond words.

I do realize, the more I read, that I have #AuthenticallyAutistic 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.  That is missing here.

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.  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 (spoons) 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. This has me terrified.

There was a time, for a while, that I had that ‘person’ so I know how I function when there’s a hand holding my kite string.  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. Cats.

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 working 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 included, 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, definitely afraid of what’s to come as I am an orange in an apple world with apple rules.

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 Sarah .. with an “h”, a 46 year old single mother finding out that I have Asperger’s Syndrome/ASD.

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 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….

About those ping pong balls now.  Consider that a visual of my brain at any moment in time, especially nowadays and anytime I am critically stressed/overwhelmed.

“A VW with a Porsche engine” as my Granddaddy described.  My brain does not stop! One reason that I have pervasive insomnia, why I am writing this blog instead of focused on other 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.

Right now, I am in the biggest freakin’ mess of a lifetime, and it is, in part, because of those ping pong balls.  They morph into racket balls days like today.  LOUD.  FAST.  UNSTOPPING. SCARY.  This is the basis that catalyzes a cornerstone component of Autism – ‘executive dysfunction’.

When there’s an army of demands, thoughts, needs coming at me at once, each their own set of images and associated sounds, it is like being in a multiplex that has dropped the walls with all the movies at full blast going at the same time.  This brings me to a standstill – to a state of autistic inertia – with a hefty side of emotional paralysis.

A bit of History….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, ever winding 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  #AuthenticallyAutistic me – who took yet another plunge into the normal world seeking help.

I lost my children for several months prior to trial, as I wasn’t heard or understood by those there to serve, protect and help.  Seems to be a trend I am now learning of, as I read recently:

“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”. 


This is what happened to me, over and over again.  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.  We are all shaken, we all lost everything -materially, “family”, community, familiarity, friends.  The moving was for safety and then for necessity.  On a single parent, no child support or family support below the poverty line income – it’s only in coming to live in a family owned home that we have a roof over our heads now.  Thankfully, now it is a NEW roof (a story for another time) after a near 2 year gut wrenching, mind overwhelming 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 with the move here, we’d 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.

My sweet NT daughter and autistic son, both with juvenile ptsd among other things,  have 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 started unraveling from nearly every angle, including a traumatic tug of war 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, has overwhelmed and torn me into shreds over the past many 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 C-PTSD, GAD, SAD, RSD 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.”

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 most all: parents, peers throughout school years, co-workers in working days, acquaintances and friends,  and the child welfare community both 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.

Perhaps this total lacking in education, understanding and acceptance of what it means to live most of a life as an undiagnosed #AuthenticallyAutistic adult is why I fight yet again, for my children, who are – again – in foster care.  Definitely 100% without a doubt – a powerful part of my #authenticallyautistic experience.

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, we are 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.  I had been in college, studying psychology and theater.  Without but a couple friends…. well, really just one.  Totally misunderstood and rejected regularly by my peers.  Criticized and not heard by my parents for my line of study, for a lot of things.  Completely depressed.

I remember telling my friend midterm fall 1993, that I felt that I had to either disappear, since I felt like I was from another planet, or kill myself.  So LOST.  I didn’t kill myself… I did think about it briefly, typical of Aspie girls around that age when the big ‘break’ from peers happens, when I realized that no way was I ever going to be in a sorority or fit in with the crowd on the campus strip, or understand societal norms as they related to my age group.  I did not want death, I just did not want to be there, to feel that lost and disconnected from the world that I wanted to be included in and save…

I left college, boarded a plane January 1994 just months shy of 22, 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 Aspie.

One of the resources for self diagnosis for which I clear 90% or more of each section is Samantha Craft’s unofficial list.

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.


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 can 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.
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.  Going to classes all day.  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.
“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.  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.