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:

  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



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