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”. 

WTF!

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.”

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 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.

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 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.

 

4 thoughts on “Lost in Translation

  1. That was beautiful, just like the person who stands in front of me when I look at you.
    Trying to get you the help has not been easy. I keep seeing the obstacles that are in your way, as soon as we figure out the course we need to navigate, the map is changed. The frustration I feel for you is real. The system is confusing for the normal person let alone for someone with Asperger. I will never give up on you. I know you’re a great mother and only want the very best for the kids.

    Liked by 2 people

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