100 Days

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:

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.

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