Ever Present Exhaustion

When will the fatigue end?

The ever present exhaustion has been in existence for so long that I can’t remember when it started. I have been in various levels of Autistic Burnout for what feels like years and years.  I have written about being exhausted multiple times.

Here is just a taste of some of these posts over the years:

Being Emotionally Exhausted – posted on February 27, 2014

Exhausted All The Time – posted on March 16, 2014

Here I am Again – The Long Road of Living Exhausted  – posted on January 8, 2015

The Hidden Meaning Behind “I’m Tired” – posted August 24, 2016

Autistic Energy – A Depletion of a Person – Posted on January 19, 2020

The exhaustion I experience never seems to end, not fully. It seems to come in waves of intensity, but never fully ebbs away. I give myself recovery days, but it is not enough. My counselor even told me that I need a good month of not having to worry about anything, but resting with people bringing me food and drink. That sounds great and all, but not realistic. I am a single mom with disabilities and Complex –PTSD of two older teens who have multiple disabilities and PTSD who are entering online college in the fall while living at home. I am in graduate school again seeking my second Master’s degree.  We are in the middle of a pandemic and my abusive ex-husband has taken away the kids’ primary medical insurance for a second time. Ya, taking a month to recover is a luxury that I can’t afford. 

My ex-husband seems to be incapable of seeing beyond his own self interests. Everything is about him and it has only gotten worse with age. He is a covert narcissist. Much of my Complex-PTSD is due to his treatment of me. What is astonishing is that he doesn’t see it as abuse. He has this notion that everyone thinks like he does and that you need to hurt others before they can hurt you. He plays this push/pull game lashing out before anyone can do anything leaving trauma in his wake.   

The kids haven’t seen their father in three years. This is not the first time that this has happened. The first time lasted about two and a half years, and then he popped back in their lives for about 18 months before pulling away again.

He is very good at charming people and playing the quiet, country boy who is the victim in all that he does. He surrounds himself with enablers, and I will admit I was once his enabler before I realized what was really happening. He is an emotional vampire, feeding off of his various supplies and then discarding them. He is on his sixth girlfriend in less than eight years since he decided he didn’t want the responsibility of a family anymore. The first three were during our last two years of marriage. The current girlfriend is living with him and is signing the child support checks using their joint account.  This really hurts the kids. He has shown them that they are not even worth less than a minute of his time to sign those checks and fill out an envelope.  The kids have never met this newest girlfriend. A stranger is sending their child support checks.

You know it is serious when each of the counselors who are working with my children and I separately explain that, in order to heal, we must cut all contact with their father, including financial support. Unfortunately, that is not fully possible yet due to still being stuck in a financial abuse cycle with him. He keeps hurting the kids and projects blames on to them as to why he does what he does. A plan is in place to help us escape.

What do you think of when you hear the term “domestic violence” or “domestic abuse”?

What images come to mind? Do you only see a battered woman or a battered child?  Domestic violence/abuse comes in many forms. Physical abuse is only one of those forms, but it seems to be the only one that people think about. “At least he doesn’t hit you!” – like that is supposed to be a good thing? No! That kind of rhetoric keeps people trapped in abusive situations.

What about all the other forms of abuse – emotional, mental, financial, sexual, medical, educational, etc.?

More about abuse:

Abuse and Its Many Forms – posted on October 29, 2018

Studies have shown that emotional abuse is as bad as or worse than physical abuse. With physical abuse, people see it, they believe it, you can get help for it, and your physical wounds tend to heal faster than emotional wounds. The physical abuse doesn’t just start out of nothing. Other types of abuse start first. The manipulation, the gaslighting, the invalidation, the projection, the denial, the blaming, the lies, the threats  . . . and then the calm. Eventually, the cycle starts again and again and again no matter what the abuser says during the calm.

cycle-of-abuse

The cycle of abuse is very, very hard to get out once you are in it. I didn’t understand what was happening until it was too late. I was an undiagnosed, developmentally delayed, autistic person. I didn’t have the language to describe or the knowledge of what to look for as warning signs. I was taught to comply and that everyone else came first before me. Growing up, I had been conditioned to be a co-dependent. I had no idea what this was until after my marriage failed, but this conditioning lead me to be a prime target for a narcissist. I married what I knew and I knew how to survive it, but at a great cost to myself and to my kids.

I know better now, but the damage was done.

I am here today learning how to live rather than just survive. This is a long, painful process. It took years to accumulate the all layers of trauma that I have, it is going to take years to unravel is all so that I can heal.  I made a promise years ago that the generational trauma that I am a product of stops with me.

Here are some of my posts about being a domestic abuse survivor and healing:

Moving from Surviving to Healing – posted on June 30, 2019

Midnight Thoughts – posted on April 28, 2020

“The conflict between the will to deny horrible events and the will to proclaim them aloud is the central dialectic of psychological trauma. [ . . . ] When the truth is finally recognized, survivors can begin their recovery. But far too often secrecy prevails, and the story of the traumatic event surfaces not as a verbal narrative but as a symptom.”

― Judith Lewis Herman, Trauma and Recovery: The Aftermath of Violence – From Domestic Abuse to Political Terror

Burying trauma or trying to ignore it and refusing to talk about it only leads to the trauma festering and turning into resentment, fear, and anger which can lead to unhealthy coping methods and passing trauma onto the next generation. Trauma needs to be talked about in a healthy way, but it can’t be rushed. Rushing can lead to more injury and adding to the trauma.

 “Trauma is personal. It does not disappear if it is not validated. When it is ignored or invalidated the silent screams continue internally heard only by the one held captive. When someone enters the pain and hears the screams healing can begin.”

― Danielle Bernock, Emerging With Wings: A True Story of Lies, Pain, And The LOVE that Heals

Trauma not only needs to be talked about, but it also needs to be listened to and validated.  Healing is a personal journey and it can take a long time. Telling someone to just let go of it and move on is harmful and invalidating. People can only move on when they are ready.

I have worked very hard to get where I am today.  As I discussed in Midnight Thoughts, I am ready to fly!!

“Taking care of myself doesn’t mean ‘me first’, it means ‘me, too’.”

I do not own any of the images. Images are linked to sources.

Fractured, but Intertwined

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I am fractured. Split into pieces due to years and years of trauma and neglect with the pieces of myself hidden away in dark corners of a room in my mind protecting me so that I can keep going. With guidance, I have discovered at least five pieces:  

  • a young girl who sits on the floor across from me with her knees up leaning sideways against the wall holding her head and gaze down not talking, because there are no words (I have written about her before),
  • a young woman standing in the corner full of shame with her head and gaze down but facing me while holding her hands up to her chest, the one who will comply and do as she is told, the one who feels broken and invisible,
  • two others with adult female bodies who are ageless standing in opposite corners
    • one stands closest to me frozen, arms slightly out to her side, unable to speak, or move, disconnected from her body, but is aware of everything around her staring at the wall but glancing sideways towards me mouthing “help”,
    • the other standing in the darkest corner facing away from all and will scream and lash out if anyone comes near her, the one who rages and is in so much pain, but remains almost catatonic when left alone,
  • and finally the current part, the mother who sits in a chair at a table under a light in the middle of the room seeing all these parts, reaching out and wanting to connect, but is unable to.

I am the mother, the one who keeps going, the one who always finds a way no matter how many times I have fallen. At least, that is what I tell myself.  I feel exhausted and helpless and so very frustrated. I reach out to those parts to comfort them, trying to make them feel whole again, but I can’t. These parts took the burden of life’s pain off of me so that I could keep going. I survived, because of them. I made it through, because of them.

Now I am a cracked version of myself with each part interacting together at various levels and reacting to specific triggers that I encounter in my life, but at the age at which they fractured. I feel I am working through the many layers of trauma while seeking refuge at the same time. There are times I want to hide in a ball in a safe place in my room away from everyone and everything. This part frustrates me. I struggle to function when this part activates. There are no words. I feel useless, overwhelmed, sad, and alone. The anxiety is debilitating. Then there are times when I want to lash out kicking and screaming and pummeling, but I don’t. I am afraid of this part of myself, so I freeze instead. I am crying for help in my head, but I can’t do anything and it feels like no one notices how much I am struggling. I feel so alone and invisible, but I am expected to keep going. I have to, so I comply. I don’t know how much of that expectation is coming from me and how much of it was internalized throughout my lifetime.

I feel like I am disassociating as I type this. My head feels heavy, but a thought has occurred to me that all these parts sacrificed themselves so that I could keep going. The drive and determination that I have to keep going has been there for as long as I can remember. Did I really do that? Place that expectation on myself, that no matter what, I have to keep going?  

I have written about resilience where I stated, “I know so many autistic individuals that have developed amazing resiliency. They have had to. Yet, this amazing ability seems to go unnoticed by so many. We understand what is being said about us, even if certain people do not notice that we are listening to their every word. We can read and understand what is being written about us, even though we might not be able to verbally prove this to certain people’s satisfaction. Resilience. We deal with a lot. Many of us crumble under the weight of the stress at some point in our lives, but many of us climb out of that rubble and continue on. That is what resilience is, the ability to keep moving forward despite adversity.”

I wonder now, how much of my resilience is based on being able to keep moving forward by unconsciously fracturing myself. Sure, it is great that I can keep climbing out of rubble and continuing on, but at what cost?

Two years ago I wrote a piece entitled To Those Who Still Don’t Understand where I discuss a study out of Sweden that was completed late in 2015 which “revealed people with autism died an average of 16 years earlier than those who do not have autism.  Previous studies had shown that 30 percent to 50 percent of people with ASD have considered suicide at some point in their lives.  Bullying, anxiety, depression, feelings of isolation and alienation all contribute to this.  There is a high cost trying to cope in a world that is not designed for you nor is accepting of you.”

I turned 45 years old yesterday. As my son explained it, I have taken 45 revolutions around the sun. I have taken 45 trips around the sun and survived each one, but the thought of how many more trips I have left weighs heavy on me. I am tired. Not just everyday sort of tired, I am at tired at a level where there is no proper words to describe it. I have written many times over the years about this, including The Hidden Meaning Behind “I’m Tired”.

I fractured trying to survive in this world that I was born into surrounded by people who did not understand me, but expected me to conform to their standards and way of living. Now I am trying to create a world that is safer where I can become whole again and be seen and respected for the person I am. This process is slow, and my patience only goes so far, but I am determined to connect to all my parts again at some level. I want to keep making trips around the sun. I am not ready to stop being a traveler. My journey still has many, many miles to go, yet.

Statement of Transformation: A Personal Journey

Below is my final essay for my Transformation of Teaching and Learning course. I went back to graduate school in March 2020 to pursue a second Master’s degree. We were restricted to 1000 words using information learned in class. APA format was required.

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soulsana-V5DBwOOv0bo-unsplashAs a brand new teacher, I embarked on a journey with naïve hope, a belief in myself, and passion for learning and teaching. Over these past two decades, that passion never waived. However, my hope and belief were tested, pushed to the brink, and cracked in a few places. Through it all, I remained steadfast to the profession I love.

I am a tired teacher; one who has ran the gauntlet of the teaching profession. I have taught in two states, multiple school districts, and multiple grade levels ranging from Native American Reservations to small districts in rural communities. I am currently a support person for families trying to navigate a confusing special education system. Through all of these experiences, I never stopped learning. I am lifelong learner improving my craft as a teacher. I entered this course with a hope that I would find academic engagement that would fuel my starving brain and help rekindle my passion.

Over these many years, my role as a teacher has evolved to become more as a guide and facilitator of knowledge and skill. I provide the necessary tools that will build that needed self-efficacy and intrinsic motivation where a person feels capable enough to take that next step through a door of opportunity of their own choosing (Ormrod, 2016). I create an environment where the student feels safe, meeting the second level of Maslow’s Hierarchy of Need, and then provide them information and resources to make an informed decision (Ormrod, 2016). Once a student makes a decision, I then provide encouragement to build the student’s sense of empowerment which aids is developing self-worth (Ormrod, 2016).  

Constructivist approaches, such as inquiry-based learning, project-based learning, and discovery learning have always felt natural to me as a teacher (Shaffer, 2018). I found inquiry-based and project-based learning opportunities were typically embedded in the school approved science curriculum and I created supplemental curriculum based on those same constructivist approaches. I did not feel comfortable using star charts, marble jars, or prize boxes to provide extrinsic motivation to my students (Ormrod, 2016; Ormrod & McGuire, 2007). To me, behaviorism seemed more about coercion to get students to do what you want. Utilizing operant conditioning techniques to reinforce a desired behavior seems to be more about programming an individual to receive a reinforcer rather than learning information or a skill (Ormrod, 2016).

This thinking changed during my years as an elementary science specialist when my classroom management techniques needed to be changed for the younger age group. I decided to explore behaviorism techniques, which included the use of star charts and a prize box. I never felt confident in utilizing these techniques. What was I actually teaching my students? Why was the pride of accomplishing a task not enough of an intrinsic motivator? I didn’t understand at the time that intrinsic motivation often needs help to develop from extrinsic reinforcement (Ormrod, 2016).

I wanted my students to feel the sense of flow that I did about science where autonomy and enjoyment of learning become driving forces of increased intrinsic motivation (Ormrod, 2016; Csikszentmihalyi, 1990). Unfortunately, my process was not always sensible, because not everyone is as passionate about science as I am.  I did not understand how the nature of my neurology was impacting my teaching ability until much later in life. I experienced a paradigm shift of my whole world view after I became a parent. All my energy focusing on academics went to focusing more on the whole person. This began when both my children were diagnosed with multiple disabilities. I only learned after their diagnoses that I, too, am considered highly impacted by a disability. 

How did I make it so far in life without knowing that I was highly impacted by a developmental disorder? I learned early on how to navigate the hidden curriculum described as the “unwritten, unofficial, unintended, and undocumented life lessons and virtues that students learn while in school” (Sulaimani & Gut, 2019, p. 30). I learned how to hide and mask. I was motivated through extrinsic reinforcers that kept me in a fight or flight state much of the time. Fear is a very strong motivator. I also had a strong need for approval that was internalized at a young age. This particular need is describe as “a desire to gain the acceptance and positive judgments of other people” (Ormrod, 2016, p. 441).

Looking back at my own educational experiences, I see a struggling, lonely student with an undiagnosed disability falling through the cracks, because she learned that “doing school”, as Pope (2001) described, meant surviving and jumping through hoops to get where you really want to be. My education philosophy has been heavily influenced by those experiences. I believe in student choice and creating a learning environment that is sensory friendly, culturally relevant, and supportive of all learning needs.

How can I, as a teacher, reach the types of students that typically fall through the cracks: those whose social emotional needs are neglected, those who are not presumed competent, and those who are treated as a behavior problem rather than a student crying out for help? I have learned that I need to work toward improving my own self-efficacy and intrinsic motivation before I can expect to reach students who struggle with the same thing. I need to be mindful of hidden curriculum that promotes the notion that “doing school” to achieve high grades is acceptable no matter the cost to the student (HumberEDU, 2017; Pope, 2001).

When I started teaching almost 22 years ago, I never thought my journey would lead to my craft evolving where the idea of educating the next generation became less about academics and more about the whole student and the community. We, as a society, need to make a cultural paradigm shift where focus is less on the idea that achieving high grades is the ultimate goal and more on encouraging critical thinking, reinforcing intrinsic motivation, and meeting the needs of all students.

References

Csikszentmihalyi, M. (1990). Literacy and Intrinsic Motivation. Daedalus, 119(2), 115-140. Retrieved April 30, 2020, from www.jstor.org/stable/20025303.

HumberEDU. (2017). The hidden curriculum | Part 1 of 2: Norms, values and procedures [Video file]. Retrieved from https://www.youtube.com/watch?v=NuLhmDE9Exo.

HumberEDU. (2017). The hidden curriculum: Part 2 of 2: Sociological perspectives [Video file]. Retrieved from https://www.youtube.com/watch?v=77psBGyYj94.

Ormrod, J. E. (2016). Human Learning (7th ed.). Pearson.

Ormrod, J. E., & McGuire, D. J. (2007). Case studies: Applying educational psychology (2nd ed.). Upper Saddle River, NJ: Pearson.

Pope, D. C. (2001). Doing School: How We Are Creating a Generation of Stressed Out, Materialistic, and Miseducated Students. Yale University Press.

Shaffer, S. (2018). Constructivism & Sociocultural Perspectives [PowerPoint].

Sulaimani , M. F., & Gut, D. M. (2019). Hidden Curriculum in a Special Education Context: The Case of Individuals With Autism. Journal of Educational Research and Practice, 9(1), 30–39. doi: 10.5590/JERAP.2019.09.1.03.    

To My Son

Baby Hand

I ponder if I could have done anything different.

Could I have prevented your trauma?

What if I had done this or that or   . . . ?

Would it have it made any difference if I had done this or that or . . . ?

The what ifs, could haves, and should haves are useless,

And only cause further misery.

 

My son,

My beautiful baby boy,

Who has grown into a resilient, young man.

Why has life been so hard on you?

It is not fair what has happened to you,

Your childhood and adolescence taken away.

Peephole

Childhood trauma

Emotional neglect

Fear

Loneliness

Isolation

PTSD

 

Domestic violence,

An umbrella terms for so much ugliness.

Financial abuse

Emotional abuse

Food scarcity

Fear of physical abuse

 

How can one parent be so cruel?

How can one parent cause so much harm?

Adverse Childhood Trauma – ACEs

You became a statistic,

Being exposed to violence in the home,

One of 275 million children worldwide.

Crying Eye

You were eleven when he left,

Leaving behind casualties of a war with himself.

I tell myself I tried and I kept trying,

But it wasn’t enough.

I couldn’t protect you,

He hurt you through me.

 

My wonderful boy,

How do I help you learn that “fun” is not a four letter word?

How do I help you understand you are enough,

And that you have worth just by being?

You bring joy to so many,

Even though the world has brought you so much sorrow.

 

Telling you I am sorry won’t make the pain go away.

I wish I had a magic wand,

Or a way to snatch up all the bad memories,

But would that really be fair to you?

We are a culmination of our life experiences – good and bad.

A combination of light and dark seeking balance.

 

You have learned how to survive,

But now as you turn the page to the next chapter,

Strive to reduce your internal entropy.

Stop punishing yourself for simply managing,

Learn how to live by connecting with your emotions,

And keep moving forward.

 

And remember – you are not alone.

Love, Mom

Sunset Mom and Son

The Facts on Children and Domestic Violence

Midnight Thoughts

“Choose to live your life”, that is what I have been hearing again and again. Choose to live rather than just survive. I am here to tell you that choosing to live doesn’t just happen over night.

The effects of trauma rears its ugly head in ripple effects. Every aspect of a person’s life gets hit, warped, and dented. Complex-PTSD takes years to acquire and it takes years to learn how to cope.

Choosing to live is a process and it looks different for each person. The path to living might be easy for some. They have been spared the anguish of grief and loss and betrayal. Their path is sunshine and rainbows with an occasional storm.

Others may find their path blocked from time to time. Life has a way of doing that to people. Throwing huge boulders and crevasses along the way. Not to mention massive hailstones and tidal waves that send a person scurrying to safety.

It can be very hard to leave that safe spot. Some never do leave. This can  result in repetitive behavior patterns that aren’t necessarily healthy, but the safe spot is what they know, so they stay.

Those who choose to leave that safe spot may have a tough journey ahead. Their path might be damaged. There might be several dead ends along the way. The important part is that the person keeps looking for the path that will keep them moving forward in life.

Along the way, a person might encounter moments where they feel stuck or moments where they feel they have lost traction. Some might even feel trapped in their circumstances. Panic might arise. Anger and frustration as well. Acknowledge these feelings.  Sit with these feelings without judgement. This is not an easy task. It takes practice and guidance from a trained professional. There is no shame in asking for help.

Find a healthy way to center yourself and try again by taking one step at a time and dealing with one thing at a time. Keep moving forward.

If you bury emotions, avoid dealing with the hard stuff, it becomes a weight that you carry with you. This weight can fester and begin to rot you from the inside out. This can cause resentment to build and anger to grow. Hatred thrives under these conditions.

I have hated in the past and it scared me. The hatred stemmed from a deep emotional injury a person caused. The power behind feeling hatred towards someone is an illusion. If left uncheck, that hatred will eventually destroy you and your loved ones.

I did not want to hate the person who caused so much pain for my children and myself. That hatred was only draining me of life energy. There was nothing good to come out of it, so I fought it. I learned to direct that hatred in a different direction. I wrote and wrote some more. As I processed the hatred, it turned to grief and fear and pain.

It has taken me years to realize that I had been only surviving my life, not living it. I wanted to live my life, but I didn’t know how. My adaptive skills were developed to survive, not live. That meant I had to unlearn old ways first before I could learn how to actually live my life. I am getting closer. I can feel it!

angel-wings-wallpaper-preview

My counselor tells me to listen to my gut. What are my thoughts before my brain jumps in and second guesses me? What are my instincts telling me?

My gut is telling me that it is time for the next chapter in my life. I have written before about holding on, that I have to keep trying, that some day I will get there. Well, I feel time has come. I feel ready to take that next big step. I choose to live my life and I am ready to fly!!

Autistic Energy – A Depletion of a Person

I have been thinking a lot about energy lately. Particularly about human energy and why I am always so tired.  I have written about being tired before –> The Hidden Meaning Behind “I’m Tired”

Being tired, burned out, exhausted is something that I continually deal with on a regular basis.  Being tired never seems to end. There is a meme that I really relate to – “I am not an early bird or a night owl. I am some sort of permanently exhausted pigeon.”

Exhausted Pigeon

Why am I like this? Why I do I feel tired, exhausted, and burned out all the time? As with everything in my life, it is never one thing.

I am not the first autistic person to write about this topic. Some others include:

The common message in all of these is the problem with masking and not being able to be your true self in a world that is not designed for you. Societal expectations have an enormous impact on an autistic person’s energy levels.  Contrary to what our society pushes, having the goal to look “normal”, or “be indistinguishable from our peers”, is not a good thing.  Having this expectation that we must strive to pass as non-autistic is damaging to the autistic person.  Unfortunately, we learn at a very young age that in order to survive, we must wear a mask.  As a young person, we may not truly understand why we wear that mask; it is almost instinctual, ingrained in our psyche that in order to make it in our society, we must hide our differences.  We become targets if we don’t.  Wearing a mask is exhausting and we can’t always hide who we are.  No one can maintain a mask indefinitely.  At some point, cracks will begin to form.  A person will eventually burnout and crash due to the tremendous toll that wearing a mask takes on a person.

That mask hides a lot of crap. Take me for example.  By looking at me, you are not going to see a highly impaired autistic person who lives in chronic pain and has mobility issues from Ehlers-Danlos Syndrome, who also has Complex-PTSD from a medical trauma and domestic abuse, who has Generalized and Social Anxiety Disorder, who struggles with depression and panic attacks, who has a math learning disability (dyscalculia), but who also has a Bachelor’s in Science degree, a Master’s in Education degree, been a teacher for over 20 years.  People have gotten frustrated with me over my dyscalculia.  I have been asked, “You are so good at Science. Why are so you so bad at math?”  A person can be good at one thing and still have a learning disability in another thing.  One doesn’t cross the other out.

I am called “high-functioning”, but that is not correct. Functioning labels are very problematic. I am seen as “high-functioning”, but then my needs are ignored.  I am told I am being ridiculous or overdramatic, that I am not really impaired, because I have been successful in X, Y, and Z.  I am questioned as to why I can’t do a thing when I did the thing last week.  There are days I stay in bed all day in recovery mode.  It takes me a long time to recover from social activities.

My son has been seen as “high-functioning” as well. The reason is that he is highly verbal and it considered twice exceptional. His educational support needs were over looked, because the school saw a gifted student and didn’t think he should be receiving services even though he qualified for those services.  He eventually had to be home schooled due to the school not being able to meet his specific needs.  My son could no longer function in a regular school setting.  Functioning labels are harmful.

My daughter has been seen as “low-functioning” and it really bothers her. People think that she can’t do things. They see her as “low-functioning”, because she doesn’t talk much in public and she carries around a stuffed animal and uses “chewies” to help her self-regulate. She complains that things in school are “dumb-down” for her and she finds that insulting. She has learned to advocate for herself and having reached the Age of Majority, she is now in charge of her Individual Education Program (IEP). She wants to be challenged, but not to the point that it overwhelms her. Who would want to be overwhelmed? My daughter is not “low-functioning”.  She has needs just like anyone else.  She can function when her needs are met.  Doesn’t that apply to everyone?

Both my children learned to wear a mask at a very young age. It is not something I set out to teach them.  I didn’t even know I was autistic until after both my children were diagnosed.  As I stated earlier, it is almost an instinctual behavior for an autistic person to learn wear a mask.  Both my children struggle with mental health issues.  Some of these issues are genetic and some were caused by their father. Children don’t choose to be neglected and emotionally abused by a parent.  Domestic violence creates ripple effects on those who have been subjected to it. If domestic violence was experienced in childhood, these ripple effects can last way into adulthood.

There has been more information coming out recently about the intersection of autism and trauma. Lauren Gravitz did a piece about this topic entitled At the intersection of autism and trauma. In the article, Connor Kerns, assistant professor of psychology at the University of British Columbia in Vancouver, Canada, is quoted:

 “We know that about 70 percent of kids with autism will have a comorbid psychiatric disorder,” says Connor Kerns, assistant professor of psychology at the University of British Columbia in Vancouver, Canada. Depression, anxiety and obsessive-compulsive disorder are all known to be more common among autistic people than in the general population, but PTSD had largely been overlooked. Until a few years ago, only a few studies had delved into the problem, and most suggested that less than 3 percent of autistic people have PTSD, about the same rate as in typical children. If that were true, Kerns points out, PTSD would be one of the only psychiatric conditions that’s no more common in people with autism than in their typical peers.

One potential explanation, Kerns says, is that, like other psychiatric conditions, PTSD simply looks different in people with autism than it does in the general population. “It seems possible to me that it’s not that PTSD is less common but potentially that we’re not measuring it well, or that the way traumatic stress expresses itself in people on the spectrum is different,” Kerns says. “It seemed we were ignoring a huge part of the picture.”  

Bushraa Khatib wrote An in-depth look into how people with autism experience trauma, and in it, Khatib states:

To date, little research has looked in depth at the experience of trauma in people with autism. Research has shown that people with autism have a higher risk of adverse childhood experiences, such as financial hardship, mental illness or substance abuse in their families or parent separation or divorce. Such events have been consistently linked to immediate and lasting health disparities, including post-traumatic stress disorder (PTSD), anxiety, depression and other mental health issues.

There are also many reasons to believe that individuals with autism are more likely to experience and struggle to recover from traumas. According to a 2015 review article published in the Journal of Autism and Developmental Disorders, studies have found that youth with intellectual and developmental disabilities are more likely to be maltreated than their peers. Social isolation, family stress, and poor communication skills – all of which are prevalent in children with autism – increase the risk of maltreatment

The lack of awareness and understanding of autism within the community and increased social isolation of individuals with autism can also put them at additional risk for victimization.

The impression I am getting from these articles is that there is a general lack of understanding of autism and how co-occurring conditions manifest in an autistic person. Due to this lack of understanding, society is ignoring a huge part of what is happening.  Living in our society, being told we must meet expectations that outweigh our abilities to meet them, constant stress of change, the ongoing sensory onslaught, the inability to recover quickly enough from the strain of pushing to meet these external expectations, and this apparent instinctual behavior to mask ourselves so that we can pass as “normal” is harming us so much so that there are those who begin to see suicide as the only logical way to end the pain.  I have written about depression and autism before –> Social Skills and Depression.

From my blog entitled To Those Who Still Don’t Understand:

As the aforementioned article states, the ages for the life expectancy of autistics vary a bit, but the statistics point to an uncomfortable reality.  Autistic life spans are shorter than typical life spans.  A study out of Sweden completed late in 2015, entitled Premature mortality in autism spectrum disorder, revealed that people with autism died an average of 16 years earlier than those who do not have autism.  There are other studies out there that support the Swedish study findings. 

Why is it this way?  Why do autistics seem to die younger than those who are not autistic?

Previous studies had shown that 30 percent to 50 percent of people with ASD have considered suicide at some point in their lives.  Bullying, anxiety, depression, feelings of isolation and alienation all contribute to this.  There is a high cost trying to cope in a world that is not designed for you nor is accepting of you.

Then there are the co-existing conditions that seem to be common to people with autism. Chronic health problems can shorten a person’s life span.  Epilepsy, Elhers-Danlos Syndrome (EDS), gastrointestinal problems, sensory overload, and lots of stress related illnesses, which can lead to physical ailments, including heart disease, brain inflammation, strokes, and diabetes – these seem to be common occurrences in the lives of autistic people. 

I will end this blog with a something that I wrote on Facebook on January 11th, 2020, and to clarify that I am not suicidal:

My counselor told me today that the complex stressors that have been ongoing in my life have more to do with environmental/systematic issues than anything else. The type of assistance/support I need to reduce these complex stressors doesn’t exist. This is not the first time I have been told this. Other professionals and non-professionals have told me this over the years.

The system is rigged and it is broken.  Our society is not designed for people like me and families like mine. I feel like I am trapped in these seemingly never ending loops of environmental and financial instability, fight/flight/freeze response, and being retriggered again and again.

On a positive note, I have been able to climb to higher loops than where I was seven years ago. Back then, I was full-on in survival mode. I was a brand new single parent who was under-employed, in grad school, financially insecure, facing food scarcity, beginning the journey of coming to terms with my own disability and Complex-PTSD, needing to begin home schooling (another system failure), and beginning the journey of supporting my children through their own grief and trauma as well as helping them learn self-acceptance. There was a lot of crying, lots and lots of crying. Survival was my only option. I had to survive so that my kids could make it.

Climbing out of a swirling tornado is incredibly exhausting, and so much of that climbing I have had to do on my own while “pulling” my kids along with me, because no one gets left behind.

I am still stuck in that damn tornado, but I am a lot further up than I used to be. I am high enough to see the top edge, but I am still too far down with too much weight on my shoulders to reach it.

I need a break. I am tired. I am just so damn tired.

There Once Was a Girl

Full disclosure:  I have been in counseling for about the last six months to address my Complex-PTSD. More information about my struggle with Complex-PTSD can be found here —–> Moving from Surviving to Healing

My counseling has been focused on trauma therapy.  We began with building my skills up so that I would not be so overwhelmed during therapy.  I learned I had really strong adaptive skills for surviving, but not for actually living my life.  My counseling is a combination of Eye Movement Desensitization and Reprocessing (EMDR), Acceptance and Commitment Therapy (ACT), and Cognitive behavioral therapy (CBT).

I have been having a difficult time with dissociation during therapy. So much so, that my counselor went to a week long training to learn how she could better support me and others like me.  My counselor has learned that she has to tread very carefully when trying to help me process the various layers of trauma that I have experienced throughout my life.  Accessing one layer has caused a cascading affect that overwhelms my mind causing me to dissociate.  My mind is basically going into seize mode to defend itself. This can be very disorienting and not at all a fun experience.

With the help of my counselor, we have realized my trauma started at a young age and continued on into adulthood.  My counselor told me that we need to help the child heal who was traumatized.  She is still there, but we need to refer to her in third-person.  The idea is that a person will less likely fall into a pattern of blaming themselves for what happened to them as a child if we refer to that child in third-person. 

According to my counselor, the young girl that was hurt long ago is still in me hiding and kind of running the show in a way. She might be silent, but she is affecting my adult life.  She hid away to protect herself, but was never given the opportunity to heal.

During my last EMDR session, I was tasked to imagine the girl. Not judge her, or analyze her, or force her to do anything. Just be there.  I was then task to imagine her in a safe place.  The image that came to mind was her sitting in the grass, under a tree, while holding her cat. This is where the girl went to hide and she has stayed there all these years. The girl did not want to talk, but she found comfort with someone being there. 

Dissociation hit me as my counselor was talking me through our EMDR session. All the images whooshed away to grayness leaving me feeling dizzy and disoriented.  Fortunately, my counselor was able to get me grounded again.  As an alternative to what we had been working on, she suggested that I write a narrative in third-person about the girl. I was to focus on only one trauma that the girl had experienced. 

My traumas are all twisted up together in many layers, so focusing on only one trauma is difficult for me, but I decided to try to write a narrative anyway.  Below is the result of my first attempt of writing a narrative about myself as a child in third-person.  I could have continued writing more, but my goal was to try to stay concise. Keep in mind, I was not diagnosed autistic until I was 36 years old, yet all the signs were there.

—————————————————————————————————-    

Tree CatThere once was a young girl who hid in her room. Her room was the only place that felt like hers.  She was allowed to decorate her room how she wanted.  No one yelled at her while she was in her room.  She was left alone. 

Life became harder when she left her room. She had to be careful how she talked.  Her father would tease and make fun of how she spoke. Her mother would ignore her or dismiss the girl unless she wanted something from the girl.  Yelling happened a lot.  Her father would yell at everyone in the house and her mother would chastise her for not being how her mother wanted her to be. The girl could not understand why this happened.

When the girl stayed in her room, she was left alone. She did not like being alone.  She would ask her parents how to make friends.  She was told to talk to people, but was never guided on how to do that.  People seemed uncomfortable when she would talk.  She was told she was quiet, shy, and stuck-up simply because she didn’t talk much.  The girl didn’t understand why people thought of her in these ways.  She had trouble pronouncing words. She found her mind went blank around people, there were no words, and she didn’t know how to ask for help.  

When she tried to ask for help, she was told to figure it out herself or that she was being silly. She was told again that all she needed to do was talk to people. How do you talk to people when there are no words?

She was told to be more like her little sister who had friends. The girl couldn’t understand how to be like her little sister.  How could she be like someone else?  What was wrong with her?

She was told to loosen up and not try to control everything. This only confused the girl more.  How was she controlling everything?  How does one “loosen up”? This didn’t make any sense to the girl.

There was so much confusion being around people. The girl always felt there was something wrong with her.  No one seemed to notice how much she struggled.  No one seemed to notice how lonely she was. No one seemed to notice how hard she tried.  Nothing seemed to ever be good enough to those who shared a life with the girl, and yet the expectations kept climbing.  The pressure to be someone other than herself grew and grew.

So, the girl would retreat to her room to be amongst her things and snuggle with her cat. She felt comfort amongst her belongings.  She was left alone when she was in her room.  She could listen to her music in peace while talking to her stuffed animals.  She would practice pronouncing words on her own in private where she would not feel embarrassed.

Unfortunately, this peace would not last. The girl’s mother began to chastise her about her toys. Her mother seemed so angry.  What was wrong with keeping the toys?  The toys were taken care of and didn’t leave the girl’s room.  The toys were special to her. The girl didn’t understand why her mother shamed her for having toys, toys that she had been encouraged to get not that long ago. Her sister wasn’t being shamed. Her sister was always allowed to keep her toys. The girl was protective of her belongings. She knew that her father would throw away anything that went into the garage.  Her father didn’t like having things in the house either.  He preferred bare walls, a television that only he controlled, and a chair that was only his.  

The house that the girl lived in didn’t feel like hers. The house was an uncomfortable place to be in. When being inside the house became too much, she would go outside in the yard or down the street into the woods. When outside, she would find a special tree to be near, to touch, and even hug. She liked the feeling of the bark. She liked the smell of trees.  She liked the intricate patterns in the trunks and leaves of the trees.  She liked to watch the insects, birds, and squirrels that lived in the trees. The girl liked being around trees. Trees didn’t yell at her. Trees didn’t chastise her.  The girl found that she could talk to the trees without having to speak.  Trees were safe. Trees understood and helped her feel better. Trees told her it was going to be okay.   

So, the girl wrapped herself up inside herself and went through the motions of the life she found herself in. She was expected to do what she was told and was taught to not make others upset.  If people were upset, she had to find ways to make them feel better, but no one seemed to take much notice when she retreated. 

Her mother would take it personally and ignore her. Her father would only interact with her on rare occasions.  She was expected to come out of her room when requested and not to question.  She was expected to be a good girl and do as she was told.  Rules were rules and she could not disappoint. To disappoint meant more yelling and more chastising.  The girl learned her needs did not matter, what she wanted did not matter.  She wasn’t allowed to show much emotion, because it made others in her life uncomfortable.  

The trees knew what she needed, though. The trees let her cry and let her scream.  She would run and dance amongst the trees, playing in the leaves and making dolls, bracelets, and crowns with the pine needles.  

Returning home meant more silence, more demands, and more loneliness. She wanted to hide when she was at home. Her cat was her only companion.  When at home, she felt something wasn’t right with her.  She felt tense and on guard all the time.  She wasn’t like how the others wanted her to be. 

She wanted wings so she could fly above everything and everyone. She wanted to soar above the trees, like Hawk Girl. She wanted the power to run incredibly fast, like Flash Gordon. She loved the feeling of the wind on her face as she rode her bike fast down hills.  The sensation made the girl feel like she was free.

And that was what she really wanted, to feel free. Feeling the wind on her face made sense to the girl. Feeling the texture of the bark on trees made sense to the girl.  Feeling the softness of a cat’s fur made sense to the girl.  Moving fast made sense to the girl.  Loosing herself in her music made sense to the girl.  Caring for her toys made sense to the girl.

What the other people in her life were saying to her and wanting her to do did not make sense. The expectations being placed on the girl did not make sense to her.  She felt so alone and suffocated in the house she lived in, but outside amongst the trees where she could run, bike, hike, dance, move, and be loud is where the girl got a glimmer of what feeling free was like.  To the girl, freedom meant having the space and permission to feel like herself.

Unfortunately, much of that was eventually taken away from her. As the years went past, the girl’s mother seemed to become even more controlling and her father even more distant.  The girl did not know that there had been a box being built around her to contain her.  The girl did not know that the other people in her life were uncomfortable with her spirit and felt that her spirit needed to be controlled.  She was still being expected to be someone else.    

The silence inside the girl grew as she wrapped herself even more into herself. She was in pain and wanted to find protection from the containment her life had become. The young girl stopped talking. She retreated deep within herself. She just wanted to be left in peace sitting under her tree with her cat staring at the blue sky, feeling the green grass under her feet and the warm breeze on her face, and listening to the birds flying overhead.

And this is where she has remained to this day.

Tree Clouds

(Images do not belong to me.)

 

Dating While Autistic and in My 40s

“The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed.”     – Carl Jung

Yes, autistic people have partners and have children. Autistic people can and do get married. Being autistic does not mean a person won’t have romantic connections with other people.  Some autistic people find it easy to be in romantic relationships and some might struggle.  Struggling in relationships is not solely restricted to autistic people. Lots of people with different neurologies have relationship struggles.  Being autistic and/or having autistic children DOES NOT increase the chances of divorce.  This is a misconception that just won’t die.  The myth is that the divorce rate in families with autism is 80%. This is not true!  The myth has been debunked!

Under a Looking Glass: What’s the truth about Autism and Marriage?

Researchers in Baltimore investigated the supposed 80 percent divorce rate for parents of a child with autism spectrum disorder (ASD). Unlike other studies, this one was particularly large – using data from almost 78,000 parents, 913 of whom had a child with autism – and included families from across the United States. The bigger the study, the less likely the results are due to chance or something unique about the pool of people studied. The researchers, from Kennedy Krieger Institute and Johns Hopkins University, found no evidence of an 80 percent divorce rate.

In fact, parents of children with autism split up as often as parents of children who don’t have autism, according to their research. In this study, about two-thirds of the children lived with their two biological or adoptive parents. That was true whether the children had autism or not. The severity of a child’s autism symptoms had no effect on the likelihood that parents would go their separate ways.

I am autistic, and, yes, I was once married. My divorce was not caused by my neurology nor was it caused by the neurology of my children.  I was in an abusive marriage, which I have written a lot about.  My ex has tried to blame my neurology as to why he did the things he did, but it really came down to him using projection and refusing to take responsibility for his actions.

Here is a list of a few of my previous posts about my abusive marriage:

Now that I got that out of the way, I want to address a different topic – dating. The last time I was dating anyone was when I was in my twenties.  Dating in the mid to late 90s was very different compared to today.  For one thing, there was no social media yet.  According to the Complete History of Social Media: Then And Now, the first recognizable social media site, Six Degrees, was created in 1997. It enabled users to upload a profile and make friends with other users. In 1999, the first blogging sites became popular.  I didn’t even know this until just now when I looked it up. This wasn’t a platform I had access to.  I didn’t have a cell phone until after my daughter was born, which would have been in early 2001.  Texting was still in its infancy at this point.  There was no YouTube, or SnapChat, or Facebook.  There was no Twitter, or Instagram, or Tumblr. Myspace wasn’t even around yet.  The World Wide Web became available in 1991, but to access it you had to dial into it through the phone line. There were no dating apps.  No one used the word “apps”.  Meeting and staying connected to people was very different when I was in my 20s.  A person had to either be “fixed up” with someone by a third party or you had to meet a person somewhere and talk to them face-to-face and decide if you want to see this person again.  I know, weird, right?

Here we are in the year 2019 and I am now in my 40s. I am a single mom to two older teenagers.  I hadn’t had much dating experience prior to being married and for much of my adult life I had been in a toxic, abusive situation that resulted in me developing Complex-PTSD as well as both my children developing symptoms of PTSD.  My ex left seven years ago and the divorce officially happened five years ago.  Seven years is a long time. On average, a person in an abusive relationship will attempt to leave 7 times before finally leaving for good.  I was no different.  I was trauma bonded to my ex and a trauma bond is very difficult to break. My ex came back after the first three years.   It didn’t last, because after a while he fell back into his abusive behavior patterns.  I hadn’t dated anyone that whole seven years, that is, until now.

Let me tell you, dating in your 40s with children is weird! Dating as an autistic woman with Complex-PTSD makes it so much more difficult and scary. It is a whole different landscape these days, and, luckily, my counselor has been helping navigate.  My children have been providing a lot of encouragement as well.  Yes, my two autistic teenagers who have never dated anyone are helping their mother figure out how to date in this modern age.

When I first entered the dating realm in my 20s, I didn’t know I was autistic. I didn’t know that I was developmentally delayed.  I didn’t understand my sensory needs.  I hadn’t been exposed to what a healthy relationship was like.  I knew I didn’t want to get married until after I finished college, but I did date.  Having children was also very important to me.  My biological clock went off long before I was ready to get married.  What ended up happening was that I married what I knew.  The skills I had acquired growing up prepared me to live in a toxic marriage. 

I knew how to navigate a situation like that. I knew how to survive.  My adaptive skills that I had acquired growing up as an undiagnosed autistic child served me well.  It got me to where I am today.  Those skills kept me alive, but I didn’t know how to live.  I am very good at surviving, but I found myself at a loss when it came to actually living my life without being in a constant state of fight/flight/freeze/fawn. 

I needed to unlearn my old adaptive skills first before I could relearn new healthier adaptive skills that would allow me to successfully be in a healthy relationship. This process of unlearning and relearning takes time and it is not necessarily a smooth transition, especially since it requires a person to process layers of trauma that caused the old adaptive skills to develop in the first place.  This process left me in a sort of grey zone of not knowing what to do or expect when I finally did meet a man I wanted to date.

This void, if you will, is very anxiety provoking. As an autistic person, I need routine and predictability.  Even if it was toxic, I knew how to navigate in my old life.  That old life was “home” to me, but I didn’t want that “home” anymore.  I wanted to know what it was like to be in a healthy relationship.  That required change and change is scary, particularly for an autistic person.  I couldn’t make the change happened without help.  The hurdle was too large for me to get over without assistance.  That is why I went back into counseling after 12 years when I was first diagnosed with PTSD.

During the time I have been in trauma therapy and unlearning and relearning adaptive skills, I joined a dating app. My counselor encouraged me and I felt it was time.  This dating app matched me with a gentleman that I probably would never have met on my own.  Different towns, different school districts, but we have so much in common.  We started chatting through the app.  Then we decided to meet. That was over two months ago and our relationship has steadily progressed in a positive direction since.  I am in my 40s and I officially have a boyfriend.  For the first time in my dating life I feel genuinely loved for the person I am, my true autistic self.  I feel accepted and seen as a person, not just seen as some extension of another person to be used as they saw fit.  It is an amazing feeling, but I still struggle with trust.  This struggle comes from being a domestic abuse survivor.  I am working on learning how to trust again, taking things slow, and enjoying every moment of it.

I don’t know what the future holds for me. I don’t know what this new experience will New Beginningslead to, but I am grateful for this new man in my life. Not only is his showing me what being in a healthy relationship is like, he is also showing my children that there are good men out there, good fathers out there who do actually emotionally support their children and provide for them without being asked to. 

My children’s negative memories about their father will never go away, but my hope is that this new experience can help build more positive memories for them. My children like this new man in my life. They like how he treats me. They have both told me that they don’t feel like they are walking around on eggs shells with this new man like they feel around their father.  There haven’t been any red flags or warning signs that this new guy is a danger either.

My children haven’t seen their father in over a year and a half. They don’t speak to him. At this point, their father still represents a danger.  He caused so much damage, but tries to pretend like everything is fine and everything is “normal”.  This situation is not fine nor is it “normal” in anyway.  This is one of the big reasons why it took me so long to get back into the dating scene.  I didn’t feel safe.  I didn’t know how to trust again.  This new man in my life has been showing me, little by little, that I can trust again.  It is a rarity for me to be able to relax around other people.  I find myself relaxing with him.  I feel better within myself and I like who I am when I am with him.  He makes me feel pretty without doing anything.  I had to learn that this is what it feels like to be respected by a romantic partner. 

He doesn’t push me into things. He is patient and understanding. He shows compassion and is empathetic. He is considerate of my needs and wants to learn about my neurology. He has even asked about words he should and should not use.  This is incredible to me.  I have not experienced this type of situation before.  He sees who I am and wants to learn more so that he can be more supportive!

I feel like a teenager again learning how to do all this romantic stuff all over again. It is confusing at times and other times it feels natural.  I am a 44 year old autistic woman learning how to date again in the modern age.  It is fun and thrilling and scary and tiring all at once.  Thanks to the development of social media and dating apps, I have been able to experience romantic love at a level that I never have before, a healthy, respected love.  Autistic people love, they have relationships, they have romantic partners, and they do get married and have children.  This process might look different from the societal norms of today. It might be slower, there might be more confusion, more heartache, but that doesn’t mean it won’t happen.  

Moving from Surviving to Healing

It has been a while since I have posted. It has been a very busy period of time.  In April, I had a huge emotional trigger that sent my life spinning.  This showed me that I had some deep emotional trauma that was demanding to be heard.  I realized that I needed help with this. So began my struggle into finding a counselor that not only accepted my insurance, but who was also familiar with Autism and was trauma-informed.

With the help of my son’s counselor, I was able to find a suitable counselor for me. I have now been officially diagnosed with Complex-PTSD and it has been officially determined my ex-husband’s treatment of me is the primary cause.

My counselor has helped me realize that I do have a lot of skills. These skills have kept me alive up until this point. What has happened is that I am now in this gray area where my skills are no longer working.  I need different skills to help me move forward into the next chapter of my life, one that is free of domestic abuse.

I am still scared. I want him out of my head, but this is going to take time.  According to counselor, my neurology has led to my memories being stored in separate protective bubbles rather than in an interwoven web.  These bubbles leak and interfere with everything else in my life.  This has led to my previous attempts at counseling to fail, because (1) no one realized I was autistic, (2) no one saw that I was in an abusive marriage and I did not have the appropriate words to understand what was happening to me, and (3) traditional forms of trauma therapy does not work when memories are stored in the way mine are. 

It has been 12 years since I last was in counseling. I was diagnosed with PTSD 15 years ago due to a medical trauma. Over a period of three years, I was traded amongst five different counselors, was put on 10 different anti-depressants, five different anti-anxiety medications, and three different sleep aids. Nothing worked and I had paradoxical effects from the various medications. It was finally determined that there was no point of me being on the medications, so I was slowly tapered off. Counseling ended around the same time.  Another five years would go by before I was officially diagnosed with Autism, Generalized Anxiety Disorder, and Social Anxiety.

I have known I am autistic for about seven years now. I also know now that I am a domestic abuse survivor. 

It has now been officially determined that both my children exhibit signs of PTSD as well.

All three of us are autistic. All three of us present differently.  All three of us have been harmed by a covert narcissist who used passive aggression as a weapon, but who can also be incredibly charming, particularly to those who are not his target.  It can become extremely difficult to get people to believe you that you are being harmed when there are no visible bruises or broken bones.

I do not know what it is like to be in a healthy relationship. My children do not know what it is like to have a supportive adult male figure in their lives. I married what I knew.  I already had the skills to survive with someone like my ex-husband, because I had grown up in a similar environment.  He felt like home to me and I didn’t understand why. 

My counselor is helping me find self-acceptance. I am still disappointed in myself.  I don’t understand why I put up with all the bullshit for so long.  We were married for 15 years.  He has been with six other women over the past six and a half years. The first three were during the last two years of our marriage.  My children and I already knew about the sixth girlfriend, so it was quite a shock to me that the letters he sent us in April to declare her presence in his life had such an impact on me.  I fell into panic that ebbed and flowed for weeks.  He knew just how to hurt me.  His letters were full of invalidation and denial of all the harm he had caused, not just to me, but to our children as well.  Once again he made me feel worthless and no good. 

Logically, I know that I have a lot of worth, but my heart is still struggling with all the internalized ableism that I was subjected to for so long. The thoughts are not my own. The thoughts that haunt me were put there by others who did not see my worth and sought control.

I was to be kept in a box of their making and contained under their authority. My needs and wants did not matter. I was expected to comply with their wishes and not assert myself in any way. 

But I did . . .

I fought back . . .

I broke out of the box, but my wings are damaged and it is going to take longer than I expected to heal.  

The second attempt at visitations ended a long time ago. My children have stopped talking to their father. They won’t even call him “dad” anymore.  My son refers to him as “my father” and my daughter refers to him by his first name.

Yet, he still periodically, out-of-the-blue, sends letters to our children that are short, unemotional, and invalidating, but at the same time claims that he loves them. I believe he feels something for the kids, but I wouldn’t call it love. Love is a verb and he has no idea how to love the kids. Whenever he claims that he loves them, it is like a slap in the face.  They don’t believe him.

Emotional abuse is a very real thing and it has life-long effects on people who have been subjected to it. It is important to believe people when they say something is not right. An abusive marriage takes time to build. This process is slow, insidious, and can happen under the radar.  I am only now learning just how deep and damaging the trauma was that I was subjected to.  I only now understand that I was subjected to not only emotional abuse, including verbal abuse, but also mental and financial abuse as well. 

He is a gun enthusiast. The last time I heard, he owned seven different guns.  He also carries concealed.  He has never threatened me or my children overtly.  He does everything covertly.  The threat is unspoken, but very obvious. My 16 year old son came up with a safety plan on his own on what to do if his father shows up unannounced.  My son should never have felt that he needed to so that, but the threat is real even if it has not been spoken out loud. Guns don’t make me feel safe.

I have written additional material over the years about being in an emotionally abusive marriage.

Invisible Scars – A Tale of Emotional Abuse Posted on June 9, 2014

Abuse and Its Many Forms Posted on October 29, 2018

Toxic Shame – You might struggle with it and not even know it! Posted on January 10, 2019

Here are some additional resources:

The Domestic Abuse Hotline

Domestic Violence and Abuse

How to Recognize the Signs of Mental and Emotional Abuse

Three charts on: how emotional and economic abuse go hand-in-hand

A Productive Rant

Privilege, Societal Barriers, the Roll of the Genetic Dice, and the Choices We Make in Life

Rolling Dice

There are days that I find myself wanting to claw at the walls and people’s faces. Some days I feel like I am suffocating, being smothered by everything. Other days I am so fatigued that I find it hard to breath. I feel that I have to fight my muscles just to keep breathing. It is not one thing that is causing this. It is never one thing.

I realize some people would view this as me whining, that I should just be content that I even have a job at all and that I have a roof over my head. I even think I am whining. Don’t get me wrong, I am very grateful, but there comes a time when there is just too much that has been going on for too long.

Why do my kids and I continually struggle when others don’t? It really has to do with privilege, societal barriers, the roll of the genetic dice, and the choices we make in life

I chose to marry a man that turned out to be emotionally abusive and then abruptly abandoned us.  Did I know he was going to become abusive? No, not in any way.  Everyone liked him. I felt I had known him all my life. The choices he has made has caused a lifelong impact on myself and our children.   

I chose to go to college and become a teacher, something I wanted to become since I was seven years old.  I was born to be a teacher. Unfortunately, the society that I live in does not really look kindly upon teachers or schools for that matter. Lots of negativity, lack of resources, and lack of support.  

Then I chose to go back to graduate school to get my master’s degree, because I had essentially become a dinosaur in my field. I was a long-term science teacher with only a bachelor’s degree.  I needed to make myself more hirable so I could support my children better. That was my thought and when I started my master’s program, we were still a two income household. I knew that, in order to complete my original plan of completing a science education graduate program, I would need the assistance of my husband. He agreed that it was time for me to go back to school and that he would be there to help me.

Our Education System

It wasn’t even two months after I began my program when my husband left. I managed for two years without his help, but due to my learning needs, it became clear that I wasn’t going to be able to finish the program. I was attending an online graduate program from a different state.  The school would only help me if I went to the disability office on campus.  That was going to be impossible, so I decided to transfer to another school. Again, another choice on my part that was due to being put into a position that was not my choice.

I managed to find and get accepted into a different online graduate program from a different state, one that believed in Universal Design for Learning (UDL) standards and supported all students in many different formats. I graduated two years later with a Master’s in Education with a focus in Autism. 

In order to complete my degree, I chose to amass student loan debt, because, in the country I live in, college is very, very expensive.  I do not have the privilege of coming from a well-to-do family that could pay for my college education. I either needed to take out student loans or not get my graduate degree.  Neither my degrees guaranteed me a well-paying job with benefits. There are no guarantees in life. 

I also chose to become a mother, twice.  Did I know that I would have complications? No, there were no indications.  Two months of bed rest with my first child (pre-eclampsia) and four months of bed rest with my second child.  There was no warning that all hell would break loose with my second pregnancy. I was almost paralyzed. I have a beautiful son and a beautiful daughter, but my body never fully recovered after my second pregnancy. I have ongoing medical problems stemming from pregnancy complications and Ehler-Danlos Syndrome. 

I am autistic, I have Ehler-Danlos Syndrome, and I also can’t build up antibodies from vaccines. This is all due to the roll of the genetic dice.  My titer levels show no evidence that I was ever vaccinated even though I received vaccinations multiple times, even in adulthood. So, yay for me.

As a person who must rely on herd immunity to protect myself from preventable diseases, I have no patience for anyone who is an antivaxer or anyone who claims vaccines caused their child’s autism. No patience what so ever.  There is a current measles outbreak happening in my state right now.  I am appalled by the self-righteous ignorance of people. They don’t care and they think they know better.

I am digressing . . .

We moved four times in the last six years. We moved due to financial, family, work, and school reasons. Was all this moving by choice? Yes, it was by choice. It has been six years of just the three of us trying to survive.  You do what you have to do to keep going and sometimes you have to make really hard choices so you don’t end up out on the streets.

This brings me back to privilege.  Why have my children and I had to struggle for so long? 

I did receive food assistance for four years up until it was decided that I made just a little too much money. This is a societal barrier.  The problem is that, sure, I work full-time, but I don’t make a living wage.  The state took away the support I needed to feed my children.  We ration food. That is hard on the body and the mind.

I am grateful for my job. My years of teaching and my master’s degree opened the door for me to be able to work in the non-profit sector where I can help families with children with disabilities navigate the education system.  I pay it forward by helping make the world better for one person/one family at a time.  This job does not pay a whole lot, but it does allow the flexible schedule that I need to be the parent that my children need.  They have weekly medical appointments that requires a lot traveling.

I have also been homeschooling for the last five years. This was not something that we had planned on.  Homeschooling became a necessity so my children could be successful and reach their potential.  My own health needs require that I have a flexible schedule.  There are days that I am unable to leave my bed, and then there are other days that end up being a 10-hour work day. I do understand that having a flexible work schedule that allows me to work the majority of the time from home is a privilege.  

There was a time that I worked three part-time teaching positions while attending graduate school and homeschooling full-time. That lasted for three years. I don’t remember sleeping much, but I made it work. Now that both my children are part of the Home Link program, which is part of the public school system. I have better schooling support for my children and they are thriving in the alternative learning experience that is available here. I do understand that this placement is a privilege and I am grateful for it.

Even though I have find myself in a better employment and schooling situation, I find that my burnout never seems to end. I have been at some level of burnout for at least two decades.  I don’t have a proper word to describe this never-ending burnout. I do have better days, but it is a constant struggle to even move.  Life keeps going so I must keep pushing myself forward, which only drains me further. It is out of sheer determination that I can maintain my daily responsibilities, but more and more things keep getting piled on. So, I remain stoic and keep treading water. Unfortunately, a person can’t tread water indefinitely. This concerns me greatly.

Life shouldn’t be this hard. Yes, I understand that there are people who have it worse than me.  My point isn’t about my situation alone.  My point applies to everyone who has to constantly struggle in a country that is considered a first world nation and a “Leader of the Free World”.

Do you know what the United States is ranked first in?

As of 2015 the U.S.:

  • ranks 1st in prisoners
  • ranks 1st in death by violence
  • ranks 2nd in ignorance
  • ranks 14th in education
  • ranks 22nd in gender equality
  • ranks 44th in health care efficiency

U.S. Has The Worst Rate Of Maternal Deaths In The Developed World

More American women are dying of pregnancy-related complications than any other developed country. Only in the U.S. has the rate of women who die been rising.

Inequality

The US has the highest income inequality of all rich countries.

Poverty

The US has the second-highest rate of poverty among rich countries

According to a 2012 UNICEF study, 23.1% US kids live in poverty. Other studies place the number a little lower, at about 20%, but both numbers are much higher than in other advanced countries. For black and Hispanic American children, the poverty rate is even higher, at 36% and 31%.

Survival BiasI need to ask that people stop telling others that it was their choice for why they ended up in a particular situation. Poverty is a systematic problem; there are societal barriers in place that prevent many from climbing out of poverty. 

For those of us who have been trying everything to make our lives and the lives of their children better, stop dismissing us by saying that we should just be happy and grateful with what we have. No, just no. 

 

“Every inspirational speech by someone successful should have to start with a disclaimer about survivorship bias.” – xkcd comics

No one should be expected to be happy when they are struggling day in and day out.  For those who keep saying that such and such worked for you, stop!! That is survival bias, otherwise known as bootstrap mentality.

I need people to stop telling others that happiness is a choice. You are not helping Happiness is not choiceanyone. Happiness is not a choice!!  Stop telling people with mental illness and/or disability that all they need to do is choose to be happy.

For many years now I have been focusing on living in the moment, to find happiness in the moment, because my life has been very stressful despite everything I have tried to do to fix the situation. This has been going on for so long that I found myself becoming really irritable.  I had to allow myself to dive into the root cause of this ongoing irritability.  I came to the realization that I am not happy.  Even those moments that I focus on are no longer enough for me to find joy in life. My irritability has been coming from me not wanting to accept that I am not happy. I was being stubborn and didn’t want to face reality.  This brings me to the next part of this productive rant.

Both my children have been described as having anhedonia. I have found that I also have it.

What is anhedonia? To put it simply, it means the absence of joy.

The clinical definition is “Anhedonia, a term first used by Ribot in 1896, is a diminished capacity to experience pleasure. It describes the lack of interest and the withdrawal from all usual pleasant activities. Chapman et al.  defined two different types of hedonic deficit: physical anhedonia and social anhedonia. Physical anhedonia represents an inability to feel physical pleasures (such as eating, touching and sex). Social anhedonia describes an incapacity to experience interpersonal pleasure (such as being and talking to others).”  

So, what’s the point?

What is the point if you find no joy in life?

Unfortunately, I don’t have an answer to this question.

My resilience has gotten me this far. I am not the type to give up. I am a survivor.  I know that I am going to keep on moving forward.  That is who I am.  I keep swimming. 

But, I am so tired . . .

I worry about my children. I find myself crying at night, because I am afraid that my health will continue to decline so badly that I will become a burden on them.  I don’t want that. I cry at night, because I don’t know if my health will let me go back to teaching full-time in the classroom and I know that once the child support stops in 2021, my income will drop significantly. I cry at night because I wish for a better life for my children.  They did not deserve the crappy deal they got with their emotionally abusive father. I cry at night, because I don’t know what it feels like to be in a healthy, supportive, romantic relationship and I have no idea if I will ever know. It has been six years and I haven’t even started dating anyone else and that is not due for the lack of wanting to start. Just trying to survive takes precedence over dating.  I cry at night, because of my stoicism. I do not have the ability to turn it off, and even if I did, I need to remain strong for my children. They know I struggle and they worry. They don’t need the stress of seeing their mother crying. 

I am so tired . . . but, I keep swimming.

I will keep treading water for as long as I can.

I am in this place, because of privilege, societal barriers, the roll of the genetic dice, and the choices I made in life as well as the choices other people in my life made. Choices have a ripple effect not only in your life, but in the lives of others.

I ask that when you make a choice, please be mindful of the impact it will have on those around you. Even if your intent does not come from a place of malice, it is the impact that counts. The impact always carries more weight than the intent.

Intent Versus Impact: When Making a Difference Doesn’t | Miriam Barnett | TEDxTacoma – VIDEO

 

(Image sources linked to images. I do not own any of the images.)