Category Archives: PTSD

Where do we go from here?

Content Warning: Mentions of functioning labels, abuse, and trauma.

Have you been newly diagnosed with a disability?

You have rights!

Do you know what these rights are?

A Guide to Disability Rights Laws

The road that led to these rights was long and grueling and there is still much to be done. Sure, people with disabilities have rights, but that doesn’t mean those rights are going to be upheld in the many interactions that occur throughout a person’s life time. Learning that you have a disability is only one step in a very long and potentially very difficult journey towards finding self-acceptance, learning self-advocacy, and developing self-determination.

I was born with an invisible disability. This invisible disability was not determined until I was 36 years old. Up until that point, I knew I was different. I felt broken. I didn’t understand why I struggled like I did, why I couldn’t be the way others wanted me to be, why the world was such a confusing place. I learned early in my life how to mask. This was one of many survival strategies that I would develop as a way to cope. My adaptive skills were all about surviving and I got really good at it. I often receive confusing looks from people when I tell them I am autistic.

I can see what is going through their minds by their facial expressions and body language.  How can that be? I am a teacher, a mother, a drive a car, I live independently, I was married, and I have completed 12 years of higher education. How can that be?

Because it is.  

But I must be high functioning? Right??

Nope.

The psychologist that diagnosed me told me that I can function, but I am highly impaired. What does this mean? It means that Autism exists on a spectrum. It means that this spectrum is not a straight line, but rather a kaleidoscope of colors on a color wheel.

Rebecca Burgess describes the spectrum as,

Each person with autism will have a set of traits all in different areas of the spectrum. The areas where they don’t have a trait will function no differently to a neurotypical brain, but may be affected by circumstances. In example, I am good at making conversation (language). But I get sensory overload in loud and crowded spaces, which then makes conversation very hard for me.

I may appear functional in certain situations, but not in others. I thrive in the world of academics, but I struggle with various aspects within academics. I have social anxiety and generalized anxiety disorder in addition to be being autistic. I also have Ehlers-Danlos Syndrome that has resulted in my muscles having to hold my body together, because my bones essentially float. I have very unstable joints and experience chronic pain. I am both a sensory seeker and a sensory avoider depending on the situation. I am developmentally delayed. I am a highly verbal person, but I struggle with communicating effectively with people who don’t understand how I communicate. I am a very literal thinker. I have dyscalculia (math learning disability); yet understanding science concepts is easy for me. I am a highly educated, highly trained person, but have continued to struggle with underemployment. I have been experiencing severe burnout for decades. I also struggle with Complex-PTSD from growing up in an environment that was damaging to me as well as being in an abusive marriage. I married what I knew, because I know how to survive in that environment.

The key word here is “survive”. I am really good at surviving, but I am only now learning at the age of 45 how to live. I have only recently understood the nature of the deep attachment wound that I have had since I was a child. Those strong adaptive skills that I have been utilizing all my life to survive are not useful when you are trying to live.

I don’t want to become a burden, so I fight every day to hold on to my independence and the appearance that I can function in this world that is not designed for me. I internalized the message over the years that I am a burden, that I am no good. I have been regularly misread and misunderstood. Toxic shame became a regular part of my life.   

I am afraid to let myself be vulnerable and rely on other people, because I have been consistently denied needed emotional support by those closest to me. I struggle accepting help, because I have trust issues and don’t want to feel like a burden.

In order to live, in order to maintain healthy relationships, I have to deprogram myself and learn adaptive skills that focus on living, not just surviving. I grew up in a home where everyone was surviving. I was not recognized for who I am as a person, but rather what I was expected to provide for others. I was conditioned to be a codependent. I continued to survive under these conditions in my marriage which only added to my trauma. I am in a better place now, but my journey is not complete. I still have a long way to go toward healing and self-acceptance.  

I made the conscious decision years ago that I was going to be the parent I needed, but never had. I became determined to do what I could to make the world better for children and my students. My counselor has had the considerable task of reminding me that I need to think about myself a well. I need to make the world better for myself and it is not selfish to think in those terms.

Logically, I know that I am not a burden. Logically, I know that I am capable and highly skilled. Emotionally, I am a no good burden not worth anything.  This is where the disconnect lies.

I presume competence with all my students. I can support my children and others in healing and believing in themselves. Unfortunately, I cannot do the same for myself. At first I thought there was some sort of barrier that I needed to find a way to get around, under, over, or through just like how I have faced all the other barriers in my life.  The truth of the matter is that there is no barrier. There is nothing there, just a void with nowhere for me to go. I am unable to reach my injured core self, because of how deep my attachment wound really is. I am stuck and have been stuck for a very, very long time in this unending cycle of grief on the edge of this void unable to cross in order to comfort and heal my core self.

So, what do I do now?

That is the challenge that my counselor and I am currently facing. What type of resource figure can I create to help bridge the void between my adult self and the injured core self?

This blog was a starting point to see if I could write to someone who was newly diagnosed and explain what disability rights are to me as well as describing the struggles of feeling like a burden and the fear of vulnerability. Unfortunately, I don’t feel I have achieved what I had set out to do.

My logical part of myself and my emotional part of myself are still at odds with each other. I began this blog by stating people with disabilities have rights. Great! Yet, we don’t live in a perfect world and those rights are routinely violated. To have to keep fighting for your own existence is exhausting, hence the decades of severe burnout that I have experienced.

To those who are newly diagnosed, your journey will be your own and it is not going to be easy. There has been progress made, but exclusionary practices are still being utilized. Intersectionality is not being considered as it needs to be. Disability Justice is not the same Disability Rights. There are individuals, groups, and organizations that have taken up the challenge of addressing Disability Justice.

From Disability Rights, Studies & Justice,

Disability Justice was built because the Disability Rights Movement and Disability Studies do not inherently centralize the needs and experiences of folks experiencing intersectional oppression, such as “disabled people of color, immigrants with disabilities, queers with disabilities, trans and gender non-conforming people with disabilities, people with disabilities who are houseless, people with disabilities who are incarcerated, people with disabilities who have had their ancestral lands stolen, amongst others.”

Initially a group of queer disabled women of color, Patty Berne, Mia Mingus, and Stacy Milbern, who eventually united with Leroy Moore, Eli Clare, and Sebastian Margaret, these activists formed the Disability Justice movement to strive for collective liberation. Visit the source of this summary, “Disability Justice, A Working Draft” by Patty Berne to read about the ten principles of the movement.

I am on a journey of healing with the goal of finding self-acceptance. I still have a long way to go, but I recognize the long distance I have travelled. I wrote the following in April 2020 in a blog entitled Midnight Thoughts,

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.

I am feeling stuck now, but this is only one moment in time. I have been a runner for 27 years. I feel confident in my running and it helps me feeling grounded. I know where my feet are when I run.  Here I am getting in my running stance. I am determined to find a way to bridge the void so that I can keep moving forward. As a newly diagnosed person, I hope you do the same.

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

glass-4787656_960_720

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.

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

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.)

 

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

Toxic Shame – You might struggle with it and not even know it!

(Trigger Warning – Mention of suicide and abuse.)

“Toxic Shame”, just reading those words makes me cringe. I didn’t know until recently that there was a term for it, but I am very familiar with the effects and damage that toxic shame causes.  In my experience, toxic shame can cause generational damage as well.

What is toxic shame?

To answer that question, I first have to explain what ordinary shame is. According to Mary C. Lamia Ph.D. , “as a self-conscious emotion, shame informs us of an internal state of inadequacy, unworthiness, dishonor, regret, or disconnection. Shame is a clear signal that our positive feelings have been interrupted. Another person or a circumstance can trigger shame in us, but so can a failure to meet our own ideals or standards.”

brene brown

In the article, What is Toxic Shame? , it is the shame that has become toxic.  That level of shame is described as “internalized shame” that hangs around and alters our self-image. For some people, toxic shame can consume their personality. For others, the shame lies beneath their conscious awareness, but can easily be triggered.

The article further explains that “toxic shame differs from ordinary shame, which passes in a day or a few hours, in the following respects:

  • It can hide in our unconscious, so that we’re unaware that we have shame.
  • When we experience shame, it lasts much longer.
  • The feelings and pain associated with shame are of greater intensity.
  • An external event isn’t required to trigger it. Our own thoughts can bring on feelings of shame.
  • It leads to shame spirals that cause depression and feelings of hopelessness and despair.
  • It causes chronic “shame anxiety” – the fear of experiencing shame.
  • It’s accompanied by voices, images, or beliefs originating in childhood and is associated with a negative “shame story” about ourselves.
  • We needn’t recall the original source of the immediate shame, which usually originated in childhood or a prior trauma.
  • It creates deep feelings of inadequacy.

“If not healed, toxic shame can lead to aggression, depression, eating disorders, PTSD, and addiction. It generates low self-esteem, anxiety, irrational guilt, perfectionism, and codependency, and it limits our ability to enjoy satisfying relationships and professional success.”

 I understand all of this.  Shame and guilt have been used as weapons to manipulate me, to control me, to make me comply with another’s wishes, to make me submit.  It is an awful experience and it stays with you.  For much of my life I had no defense against this.  I was conditioned to be a co-dependent early on. I was taught that my needs came secondary and that I must never disappoint.  It was the end of the world if I disappointed, so I complied, much to my detriment.

Taking responsibility for things that aren’t yours (false responsibility) and toxic guilt are two things that often go hand in hand with toxic shame. A person ends up becoming overly agreeable which opens them up to being easily manipulated. Shame corrodes the person from the inside and can affect all areas of their life.

This is not something that just goes away. My conditioning followed me well into adulthood. Mix in my autistic brain insisting that “rules are rules”, my unwavering loyalty, my need to help others, my fear of disappointing people, my social anxiety traits, and my full-blown Generalized Anxiety Disorder as well as never being taught growing up how to advocate for myself (I learned as an adult) and I ended as someone who has, overtime, developed Complex-PTSD from being subjected to years and years of emotional neglect and abuse.

Keep in mind that shame and guilt are two different feelings.  Brene’ Brown, researcher-storyteller, explains in her TEDtalk – Listening to Shame:

Shame is a focus on self, guilt is a focus on behavior. Shame is “I am bad.” Guilt is “I did something bad.” How many of you, if you did something that was hurtful to me, would be willing to say, “I’m sorry. I made a mistake?” How many of you would be willing to say that? Guilt: I’m sorry. I made a mistake. Shame: I’m sorry. I am a mistake.

I was not the way they wanted me to be.  My masking took a huge toll on me, but, in my mind, I had to comply. It was how I avoided the shame and guilt trips.  If I just complied, then I was spared the emotional gut punching. By complying and trying to please, maybe I could feel valued and not worthless, at least for a little while.  If I objected in anyway, advocated for myself in ways that contradicted them, and/or insisted on maintaining my personal boundaries, then the shaming would begin. The shaming is still happening, but instead of complying, I get angry.

My neurology and my ability to parent have been attacked for years.  This started when I had had enough and drew a metaphorical line.  I wasn’t going to tolerate being treated like that anymore.  I should never have had to fight those closest to me in order to have my individuality and identity, but I did fight for over three decades.

How does toxic shame become generational?

Parents can unintentionally or intentionally transfer their shame to their children through verbal messages or nonverbal behavior. If they were subjected to toxic shame, then they might project that shame onto their own children and the cycle continues. This is even truer when a parent has an untreated personality disorder or untreated mental health issue. Some examples of this include: a child might be feeling unloved in reaction to a parent’s depression, absence, indifference, or irritability or feel inadequate due to a parent’s competitiveness or over-correcting behavior.

Toxic shame makes it very difficult for a person to accept themselves. A person can find that they hate themselves, that they feel absolutely worthless and have no value what so ever. If this person is also autistic who is trying to live in a world that is not designed for them then that feeling of worthless and emotional pain only grows exponentially.

Up to 50 percent of autistic adults have considered ending their own lives, a rate two to three times that seen in the general population (1).  There was a time that I wanted to die.  I wasn’t suicidal. I just wanted my physical, mental, and emotional pain to end – more on that here.

According to Luna Lindsey:

Shame sends two of these three messages: 

  • I am intrinsically unacceptable which will make me always be alone
  • I am inherently unfixable and therefore will always be a source of trouble for those who do love me.

And shame (and resulting anxiety and depression) causes so much pain, that the third ingredient is an easy leap. After suffering long enough, suddenly death seems like a relief.

Luna continues on and suggests some possible solutions:

Affirmations – “For starters, when I feel this way, I often find relief from reading the well-crafted and autism-specific affirmations by Liane Holliday Willey which are posted on the WrongPlanet forums. These work most of the time, except for when, for whatever reason, I’m feeling overly cynical and don’t believe them.”

Self-Acceptance – “Because of these differences, there are many behaviors that will always be difficult or even impossible for NTs to accept, and you have to accept that, too.”

Identify your strengths (Aspie Superpowers) – “These are examples of how ASD makes you particularly awesome. They are the other side of the coin, your X-ray vision to the kryptonite. For examples, see the two links at the beginning of the paragraph. Come up with your own list. During shame-filled times, go over them and remind yourself of your strengths.”

Consider coming out –According to Brené Brown, shame requires secrecy, silence, and judgement to survive. Without these things, it will die. Consider finding a safe space, free of judgement, either with safe family, or safe friends, or with a therapist, or online at a place like WrongPlanet. Bring your shameful moments to light. If you feel judged, then go back into your shell until you do find someplace safe.”

To close, I would like to share a poem by Tara Brach, Radical Acceptance:

May all beings

Heal and awaken

Into the love and awareness

That holds and honors

The fullness of being.

(Poem found at The Power of Mindful Empathy To Heal Toxic Shame)

 

References:

  1. Segers M. and J. Rawana Autism Res. 7, 507-521 (2014) PubMed

Abuse and Its Many Forms

(Content Warning:  Discussion about the different forms of abuse and a personal story.)

Abuse can come in many forms. Some forms are so imbedded into society that they are often overlooked, ignored, and/or dismissed. So, what constitutes being abused?  According to the Lanark County, Ont. Coalition against Family Violence, a single act may not constitute abuse, but if someone is doing something to harm or control you then you are being abused. You have the right to be treated with respect and to feel safe in your home.  Abuse is a violation of an individual’s human and civil rights and in the worst cases can result in death.

The East Riding Safeguarding Adults Board has compiled a list of ten types of abuse:

  • Discriminatory
    • race
    • gender
    • gender identity
    • age
    • disability
    • sexual orientation
    • religion
  • Psychological
    • emotional abuse
    • threats of harm or abandonment
    • deprivation of contact
    • humiliation
    • blaming
    • controlling
    • intimidation
    • coercion
    • harassment
    • verbal abuse
    • cyber bullying
    • isolation
    • unreasonable and unjustified withdrawal of services or supportive networks
  • Financial or material
    • theft
    • fraud
    • internet scamming
    • coercion in relation to an adult’s financial affairs or arrangements, including in connection with wills, property, inheritance or financial transactions
    • the misuse or misappropriation of property, possessions or benefits
  • Organizational
    • neglect
    • poor care practice within an institution or specific care setting such as a hospital or care home
    • poor practice in relation to care provided in one’s own home
  • Neglect and acts of omission
    • ignoring medical, emotional or physical care needs
    • failure to provide access to appropriate health, care and support or educational services,
    • the withholding of the necessities of life, such as medication, adequate nutrition and heating
  • Physical
    • assault
    • hitting
    • slapping
    • pushing
    • misuse of medication
    • restraint or inappropriate physical sanctions
  • Sexual
    • rape
    • indecent exposure
    • sexual harassment
    • inappropriate looking or touching
    • sexual teasing or innuendo
    • sexual photography
    • subjection to pornography or witnessing sexual acts
    • indecent exposure and sexual assault or sexual acts to which the adult has not consented or was pressured into
  • Domestic
    • psychological abuse
    • physical abuse
    • sexual abuse
    • financial abuse
    • emotional abuse
    • so called ‘honour’ based violence
  • Modern slavery
    • slavery
    • human trafficking
    • forced labour and domestic servitude

Traffickers and slave masters use whatever means they have at their disposal to coerce, deceive and force individuals into a life of abuse, servitude and inhumane treatment.

  • Self-neglect
    • a wide range of behaviour neglecting to care one one’s personal hygiene, health or surroundings and includes behaviour such as hoarding

NO ONE DESERVES TO BE TREATED LIKE THIS!!! NO ONE DESERVES TO BE ABUSED!!!

GrieveThis is a very difficult topic to be writing about. I grew up in an emotionally and verbally  abusive home. I was in an abusive marriage for 15 years.  I married want I knew.  That was my “normal”.  Everyone who has survived an abusive situation has a story as to why they stayed.  Everyone does.  I am no different.

Growing up, I didn’t feel safe and I felt there was something wrong, but I didn’t know what it was. I didn’t know the language.  All I knew was that I felt safer staying in my room by myself and listening to my music.  It wasn’t until I become a teacher and took classes on abuse that I started to learn the language.  Even then it took my years to finally break free of the situation I had found myself in.  I was taught to just deal with the verbal abuse.  I was taught that the worse thing I could do was disappoint my family.  I had to comply with whatever I was told.  I was conditioned to be a codependent and it was my job to keep everyone else happy.  I learned at a young age that my needs didn’t matter, that my voice didn’t matter.  This continued way into adulthood and into my marriage.

A part of me wants to write about all the different things that were done to me in the name of love, or at least, that was what I was told. It was for my protection, it was because a person cared, it was because I needed to be a better daughter or a better sister or a better wife or a better mother.  That I couldn’t be trusted in making decisions for my children or that I was broken or that I was just a bad person.  The list goes on.

My ex-husband has admitted that he was trying to contain me, to keep me in a box. Letting me spread my wings was frightening to him.  In his mind, by keeping me in a box, he was protecting me.  I know my mother thinks in those same terms.  In her mind, I  needed to be protected.  In order to do that, in her mind, I needed to be controlled and contained.  I was not allowed to be me.  I feel like a shadow around my parents. Something that just stands in the corner until requested.  I feel the most disabled when I am with them.

Remember, you have the right to be treated with respect and to feel safe in your home.

I have a parent who attacks my neurology. This parent is very ableist and doesn’t even know or wants to know what ableism is. This parent is about control and will manipulate (covertly and overtly) to get it. This parent has problems, but is in full denial.  My ex-husband has untreated mental health problems and a destructive personality disorder. He did get a full psychological evaluation, but refuses to get professional help. My ex-husband and this parent are both passive aggressive, manipulative, and emotionally abusive. My other parent is verbally abusive.  This parent’s anger management problem is right out there in the open.  My ex-husband also has anger management problems, but his is silent and terrifying.  As I said before, I married what I knew.  This was the world that I grew up in and remained in it as an adult.

Four and a half years ago I had had enough. My marriage had already ended.  I had learned that I was stronger and more resilient than I even realized.  I drew a line with my parents, a healthy boundary. I would no longer tolerate the ongoing abuse. I cut off contact to my parents.  Not completely, though, we still email every so often, but I don’t feel safe with them.  I have tried multiple times to reason with them, but was told they are not going to change.  I had to think about myself and my children.  It all really hit me when my children began asking each of their counselors why their grandparents treated me the way they did.  I had to make a change for my own welfare and for my children’s future.

AbusersSomewhere in the back of my mind I knew growing up there was a problem with my family. The cycle of abuse goes back several generations on both sides. I had promised myself that the abuse stopped with me. I was not going to allow the cycle of abuse to continue with my children.  Unfortunately, their father had other ideas. He emotionally abused and neglected them.  The good news is that his cycle of abuse was caught earlier.  My children have been in counseling since they were little learning to cope with the cards life has dealt them.  They are stronger and more resilient for that earlier intervention.  I am still determined to make sure the cycle of abuse in my family stops with me.  I will not allow the abuse to continue.

What can you do?

  • Educate yourself.
  • Believe when someone tells you something is wrong. I tried to reach out for help many times, but no one would believe me.
  • Listen with compassion.
  • Don’t be judgmental.
  • Encouragement is key.

Here is some helpful information about stopping abuse:

Here are some additional blogs that I wrote about trauma and abuse:

 

Trauma Does Not Define You

In Greek, trauma means “wound”. Originally trauma referred to physical wounds, but nowadays trauma also refers to emotional wounds. The psychological reaction to emotional trauma also has a name.  It is more often referred to as post-traumatic stress disorder, or PTSD.  I am very familiar with PTSD.  I was diagnosed with it about 14 years ago. This original diagnosis arose from a horrible medical trauma that I endured and also from the behavior of those closest to me at the time.  Since then, my diagnosis has changed to Complex-PTSD due to what I have come to realize were years of emotional and mental abuse at the hands of my ex-husband and what I endured as a child growing up.  I married what I knew. 

Growing up in a household where verbal and emotional abuses were tolerated really confused my autistic brain. I was told I was loved, and I believed it, but the behavior was not what you do to people you love. As a teacher, I learned the phrase, “at least he is not hitting me”, is a red flag that something is very wrong.  I heard that phrase over and over again growing up.  I was taught to comply, to make excuses.  I was conditioned to be a codependent.  Talking about any of this outside and inside the family was and still is discouraged.  I knew something was off with my family, but I didn’t know what it was.  It just felt uncomfortable.  Yet, I still married what I knew.   

Emotional abuse is insidious. It starts slow and under the radar.  You have no idea what is really happening, only that something doesn’t feel quite right.  The perpetrator may even pull back and be charming again when you call them out on something.  Everything might seem perfectly fine again, but over time that uncomfortable feeling starts up again and it gets worse and worse each time.  It is incredibly confusing.  Before you know it, you find yourself trapped telling yourself that you just have to wait for him to cycle back to being the man you married.  This is what is called the cycle of abuse.  You find yourself holding out for the good times to come back, and that is the perpetrator’s biggest weapon, playing on your hope. You find yourself holding on for something that will never come, real peace and real love.   

As a child, I would wait out the aggressive verbal outbursts and the passive aggressive manipulation until we could feel like a family again.  While growing up, I had no idea I was in this perpetual state of fight or flight. I was always on edge and preferred to be in my bedroom.  Now I understand why I did isolated myself, but back then, that was my “normal” and it was exhausting and frightening.  As a spouse, I did the same thing. I waited out the passive aggressive emotional abuse until the good times returned.  I married what I knew.

According to SAMHSA, adverse childhood experiences (ACEs) are stressful or traumatic events, including abuse and neglect. These experiences may also include household dysfunction such as witnessing domestic violence or growing up with family members who have substance use disorders. Having your ACEs score is like having your cholesterol score.  The score is a guideline to help you learn your risk factors for particular things. 

How childhood trauma affects health across a lifetime | Nadine Burke Harris (TEDtalk – video)

Childhood trauma isn’t something you just get over as you grow up. Pediatrician Nadine Burke Harris explains that the repeated stress of abuse, neglect and parents struggling with mental health or substance abuse issues has real, tangible effects on the development of the brain. This unfolds across a lifetime, to the point where those who’ve experienced high levels of trauma are at triple the risk for heart disease and lung cancer. An impassioned plea for pediatric medicine to confront the prevention and treatment of trauma, head-on.ACEs Impact

The Impact

ACEs scores are strongly related to the development and prevalence of a wide range of health problems throughout a person’s lifespan, including those associated with substance abuse.

ACEs include:

  • Physical abuse
  • Sexual abuse
  • Emotional abuse
  • Physical neglect
  • Emotional neglect
  • Intimate partner violence
  • Mother treated violently
  • Substance misuse within household
  • Household mental illness
  • Parental separation or divorce
  • Incarcerated household member

The ACEs study used the top ten reported adverse childhood experiences when designing the questionnaire, which consists of ten questions and involves your life prior to 18 years old.  Five questions are personal — physical abuse, verbal abuse, sexual abuse, physical neglect, and emotional neglect. Five questions are related to other family members: a parent who’s an alcoholic, a mother who’s a victim of domestic violence, a family member in jail, a family member diagnosed with a mental illness, and the disappearance of a parent through divorce, death or abandonment. Each type of trauma counts as one.

I went through the questionnaire  and had a score of 3/10. I had both my children take the questionnaire as well.  Their scores varied.  My daughter had a score of 8/10.  My son first had a score of 4/10, but then he adjusted some of the questions to reflect one parent, his father, and he ended up with a score of 6/10.  I knew their scored would be higher than mine.  They have dealt with a divorce and a father who emotionally neglected them and emotionally abused their mother.  Even with that, learning their scores punched me in the gut. 

I reminded them that their trauma does not define them. Trauma can affect yourself-definition either consciously or unconsciously. Trauma hurts, and as hard as it is to grieve, trauma is not who you are. Your ACEs score is not what is wrong with you; rather it reflects what has happened to you. Just as trauma does not define you, your ACEs score does not define you.  What makes the difference is getting help and developing resilience. 

Prevent ACEs

We Can Prevent ACEs – Video by Centers for Disease Control and Prevention (CDC)

Childhood experiences, both positive and negative, have a tremendous impact on future violence victimization and perpetration, and lifelong health and opportunity. As such, adverse childhood experiences (ACEs) are an important public health issue. Learn how everyone can help prevent ACEs by using strategies to create safe, stable, nurturing relationships and environments for all children.

Part of healing from trauma is stating what happened. It is important to share your story in whatever way you are able to, but being able to takes time.

A few days ago in the car, one of my children stated, “Dad committed acts of domestic violence.”

This was the first time either one of them has used the term “domestic violence” in connection with their father. My marriage ended six years ago.

Finally being able to share this information out loud with me meant one step farther away from the trauma and one step closer to healing.

Where do we go from here?

  • There is no time limit on grief.
  • Everyone grieves differently.
  • Don’t let trauma consume you. Don’t live there.
  • No wallowing!
  • Get help!
  • Strive to heal.
  • Obtain and utilize healthy coping skills.
  • Do what makes you feel good in a healthy way.
  • Reduce risk factors.
  • Increase protective factors
  • Get involved in community.
  • Talk to someone.
  • Educate yourself.
  • Find what makes you feel your true self.
  • Most of all – Be gentle to yourself!!!