Oh, To Be Free!

I feel I was not only denied my childhood, but also denied being present for the early years of my own children. I was trapped in survival mode, stuck in a perpetual state of fight/flight/freeze/fawn. The four Fs of torment that never stopped and no one seemed to notice how stuck I really was. My doctor knew my cortisol levels crashed way too early each day, but had no answer as to why. My heart regularly felt like it was trying to beat out of my chest, but this was so “normal” to me that it was pushed off to the side. I often would wake up drenched in sweat after having repetitive nightmares no understanding what the images meant and why my body was reacting the way it was.

I would learn much later in life that those nightmares were flashbacks, and my body was physically reacting to the memories it contained of all the trauma I have experienced in my life. I have Complex-PTSD stemming from childhood trauma and trauma experienced well into adulthood.

Yet, the ones who were there at the time of the trauma, the ones who were responsible for the trauma that I experienced, don’t see it as neglect or abuse or trauma. They don’t think they did anything wrong. They claim I am the problem, that I am the one that just won’t “let go” and “move on”, that I am the one who needs to just accept people for who they are.

What about me?

These same people don’t know who I am as a person. Not really. They only know of the how I presented myself while in survival mode. They saw this presentation and assumed that this guarded, stoic, stiff, quiet person was me. This is not who I am. My competence was also questioned many times. I am more capable than people realize, but for some reason, I am seen as someone that must be protected and contained.

Growing up and well into adulthood, all I wanted to do is run. I wanted to feel like I was flying! I wanted to spread my wings and escape everything, to be free and be able to breath, to feel comfortable in my own skin. I love to run. I have been an active runner for 28 ½ years. I have written about running before –> Why I Run.

I have often said the reason I run is to help me feel grounded, to reduce my stress, to help me self-regulate, but I started asking myself if there was another reason for why I push myself to run like I do. It is one thing to run, because you like it, and it helps you to stay in shape. It is another matter when you run to escape something.  I started asking myself this, because running isn’t working like it used to. I am not feeling calmer. I push harder and run farther, yet I remain feeling panicky and stressed. My brain feels jumbled. I feel like I am having a harder time holding on to the present. I feel pulled in different directions.   

I need to let go, but not in the way the others were telling me all these years. I need to let go of the idea of wanting to have the connection I craved as a child. There is still a part of me, a much younger part, seeking that connection.  It doesn’t want to let go. It is desperate and so lonely and scared.  It keeps saying “just keep trying”, “just give them more time, they will come around”, “just be more patient”. This is what trauma can do to a person, it traps you in hope from the past. It is a cruel game and there is no winner.

There is another part of me, a part that just wants to settle and give up. This part keeps saying “there is nothing that can be done”, “this is how it is”. This part feels older, maybe high school age. This part feels so disconnected, so discouraged. I began disassociating at a young age prior to this part of myself forming. Trauma can also do this to a person, when a person can not escape physically, they escape emotionally and mentally. Stoicism has been a survival mechanism for me for a long time.

A third part, my current self, is frustrated. I don’t want to live like this. Fighting with the pieces of myself. My much younger self doesn’t want to give up. It pushes me to keep going in whatever endeavor I am pursuing. My teenage self doesn’t want to disappear into nothingness. This part shuts off my emotional side. These parts drive me. It feels like a compulsion. I have to keep going or I will drown. I have to do well. I have to be better. I have to prove myself. I can’t disappoint.

I have a fear of disappointing people. This is attached to my trauma as a young child. I was so young and didn’t understand what happened. I was blamed for something that wasn’t my fault. The yelling and screaming – I still feel it today. I was told I was bad, that I was a disappointment, that it was my fault, but no explanation was given, no care to see if I was alright. I was just left alone in confusion and fear, separated from everyone.  I was just left . . .

I felt so unseen growing up, invisible to others. Part of that was me trying to not be noticed. Being noticed would result in being yelled out or dumped on or hugged without consent. The other part was how those around me assumed I was rejecting them, so I was ignored. I wasn’t rejecting them. I needed connection that met my needs. My needs have always been different from theirs and they didn’t understand this. I grew up as an undiagnosed autistic. Thirty-six years would go by before I had an answer as to why I am how I am. Thirty-six years of confusion and spending much of that time in some sort of dissociative state trying to protect myself. Stuck trying to run from all that emotional pain, but I couldn’t escape it. More information about this can be found here –> Breathe.

Unprocessed trauma follows a person, and it finds a way to let a person know that it is still there. Unprocessed trauma can erupt out at the most inopportune moment when you least expect it.

I need to let myself grieve. This is not something that is easy for me to do. I wasn’t allowed to grieve as I needed to growing up, nor was I helped with my grief, so all that grief got stuck. A human vessel can’t contain grief indefinitely. Grief ended up fracturing me into different pieces and those pieces ended up controlling my decision making depending on which got triggered.  So much fear and sadness in my younger self, so much emptiness and determination in the teenage self, so much frustration and exhaustion in my older self. All these parts are vying for control trying to protect the person I am.  

As a developmentally delayed person, I didn’t reach my teenage angst years until my 30s. My guess is that I am on average about 10-15 years developmentally behind my peers and even farther behind emotionally in certain areas of my life. I still feel like I am a teenager with 47 years of experience on this planet, a very tried and sad teenager. I have two Master degrees yet feel so naïve and unexperienced in areas of life that are typically experienced at a much younger age.

For me to continue healing, I need to connect with my core self. I have yet to do that. Trauma work can take years. I have worked through years and years of layers of trauma that were distancing me from my core self. I was cutoff from who I am as a person due to living in survival mode for so long. I have written about this before –> What does it mean to be me?

I know that I will never get the years back that were taken from me. I need to grief that lost time. I need to find a way to give back what was emotionally dumped on me. My core self is there. I can feel it. A fledgling beacon of light waiting for me to find my way back home.

Psychotherapist Rachel Eddins, M.Ed., LPC-S, describes the core-self as “your true self, or most authentic self.” It is our “inner wisdom, inner nurturer, wise self, feeling self, inner voice…”. Your core self is not your thoughts, but rather what notices your thoughts. Your core self is described as your essence and intuition that we tend to basically silence or stifle as a way to protect it. We tend to use distraction, avoidance and surface communication (pretending to be happy) as well as dissociation to protect that core self. We do this, because our core self is a vulnerability.

I want to let my vulnerability out. I want it to spread its wings and fly. Oh, to be free!

I can make this happen by allowing myself to grieve. My grief weighs me down. I carry too much. I feel that the fractured parts of myself are ready for me to do this, to finally let go, but I can’t force it. I have complicated grief. Not due to the actual death of a loved one, but rather the loss of a life that never was. A life that had started, but was snuffed out by societal expectations, domestic abuse, and generational trauma.  

I am the result of a square peg being pounded down to fit in a round hole. I never fit that round hole and was heavily damaged from years of pounding. It is a difficult journey coming to the realization that you were born into a mix match situation. I desperately wanted connection with people who couldn’t provide the connection that I needed. I couldn’t be how they wanted me to be either. It was a mix match.

I married into other mix match, like what I grew up in. I knew how to survive in that mix match. Unfortunately, that mix match continued to harm me in ways that I am still figuring out. I thought my role was to find a way to fit in that mix match, that it was my job to comply, because I had the internalize belief that the problem was me. It never was, though. I am not the problem. The problem was the mix match. The majority felt they were in the right, because they all felt the same about the things happening around us. I was different.

I didn’t fit the mold. I didn’t fit the core beliefs that the majority had. My core beliefs were different. I hid the person I am to survive. This only hurt me as a person. My core-self never changed no matter how much pounding I endured.

The person I am, my core-self, is still waking up from being locked away. I feel like I am experiencing life for the first time. Sensations feel different, more real. I feel more connected to my body now than I have ever been. This is a sign that my mind is healing.

The people in my life may never understand why I embarked on this journey and that is okay. They are not meant to understand. This is my journey. This is me learning to fly!

Autism and Statistics – It is Autism Acceptance/Awareness Month . . . Again!

With Autism Acceptance/Awareness Month upon us, I wanted to send out some statistics, hurdles, and disparities.

Statistics:

According to Inclusionary Practices Project (IPP) LRE/Placement Data, Washington State, where I live, ranks 44th out of 50 states in inclusionary practice in educational settings.

The Access Ranking indicates how much access to mental health care exists within a state. The access measures include access to insurance, access to treatment, quality and cost of insurance, access to special education, and workforce availability. A high Access Ranking indicates that a state provides relatively more access to insurance and mental health treatment.

The 9 measures that make up the Access Ranking include:

1. Adults with AMI who Did Not Receive Treatment
2. Adults with AMI Reporting Unmet Need
3. Adults with AMI who are Uninsured
4. Adults with Disability who Could Not See a Doctor Due to Costs
5. Youth with MDE who Did Not Receive Mental Health Services
6. Youth with Severe MDE who Received Some Consistent Treatment
7. Children with Private Insurance that Did Not Cover Mental or Emotional Problems
8. Students Identified with Emotional Disturbance for an Individualized Education Program
9. Mental Health Workforce Availability

Washington is overall ranked 31 out of 50 states and Washington D.C for providing access to mental health services. The overall ranking includes both adult and youth measures as well as prevalence and access to care measures.

Washington State has a 40.5 percent disability employment rate, which puts it 20th in the nation in terms of jobs for people with disabilities with autistic people having the lowest employment rate (58%) when compared to peers with intellectual disability (74%), emotional disturbance, speech impairment, or learning disability (over 90%).

This means 42% of young adults on the autism spectrum never worked for pay during their early 20s. Data shows that it can take up to 6-8 years for the employment rate of these young adults to match that of their peers with emotional disturbance, learning disability, or speech language impairment.

Pre-COVID data (2019) shows a whopping 85% of autistic college graduates are unemployed, compared to the national unemployment rate of 4.5%.

Hurdles:

• Getting past the interview has been reported as a major barrier for many autistic people.
• Knowing how to self-advocate.
• Understanding rights under the ADA.
• Knowing how to get accommodations and services as well as needed guidance.
• Social isolation and loneliness.

Quotes from Why is the Autistic Unemployment Rate so High?:

“Not only do Autistic workers and Autistic would-be workers face the struggle for acceptance and the struggle for accommodation, but Autistic people experience a higher-than-average rate of other issues that affect employability such as gender and sexual identity issues and other, co-occurring disabilities.”

“The vast majority of Autistics in the workforce fall through this “crack” between too-low expectations and too-high demands and either get turned away from employment or offered underemployment positions that do not pay enough money to support us.”

Young autistic adults have a difficult time following high school for almost any outcome you choose – working, continuing school, living independently, socializing and participating in the community, and staying healthy and safe. To complicate matters, many of these youth begin their journey into adulthood by stepping off a services cliff with access to needed supports and services dropping off dramatically after high school with too many being left with no help at all.

More Quotes from Why is the Autistic Unemployment Rate so High?:

“Autistic people are seven times more likely to be Transgender than the general population. Since the Transgender unemployment rate is three times the unemployment rate among the general population, the intersection of autism and gender identity issues is bound to be another aspect that explains the high rate of unemployment among Autistic people.”

“As for other disabilities, nearly half of all Autistic people meet the criteria for anxiety disorders, between 10% and 33% of Autistic people qualified for the workforce have epilepsy, around 30% of Autistics also have obsessive-compulsive disorder, Autistic people experience at least double the amount of sleep disorders as the general population, and so on. There are other conditions that are not yet strongly documented in scientific literature but which the Autistic community has noticed appearing at a much increased rate among us, for example Ehlers-Danlos syndrome.” 

Using a Danish population-based sample of more than 6.5 million persons with observations over the course of 10 years, both suicide attempts and deaths were found to be more than 3 times higher among individuals with autism, with significantly higher rates compared with the general population across all age ranges, beginning from age 10 years.

Womenkind Worldwide explains that intersectionality is the acknowledgement that everyone has their own unique experiences of discrimination and oppression, and that we must consider everything and anything that can marginalize people, including gender, race, class, sexual orientation, physical ability, disability, etc. The term “intersectionality” was coined by Professor Kimberlé Crenshaw in 1989 and was added to the Oxford Dictionary in 2015 with its importance increasingly being recognized in the world of women’s rights.  Autism statistics don’t tell the whole story. How intersectionality plays into the statistics need to be kept in mind when focusing on building support services and resources.

United States Population Overview

• 1 in 54 children are estimated to have Autism Spectrum Disorder (ASD) in the U.S. (CDC, 2019)
• 1 in 45 adults are estimated to have ASD in the U.S. (5.4 million people) (Fox, 2020)
• Boys are diagnosed with ASD 4:1 compared to girls (APA, 2013, p. 57)
• White children are diagnosed with ASD more than Black or Hispanic children (CDC, 2019)
• ASD diagnosis is positively correlated with socioeconomic status (CDC, 2019)

Within these statistics are gender and minority disparities. Girls are historically underdiagnosed and children of color and those from diverse ethnic groups are more likely to be diagnosed later and to receive inaccurate diagnoses (such as conduct disorder) compared to white children (Mandell et al., 2009). The issues that contribute to these disparities include, access to ASD assessment and screenings, clinician bias (Cheslack-Postava & Jordan-Young, 2012; Mandell et al., 2009), and diagnostic tool bias (Harrison et al., 2017). Another issue that adds to these disparities is that there have been very few peer-reviewed studies on evidence-based practices for ASD that adequately report on race and ethnicity. Of those studies that do, the majority of participants are white (West at al., 2018).

 Then there is the issue of masking. I have written about masking before –> Autistic Energy – A Depletion of a Person . Masking is also referred to as “camouflaging” or hiding who we are as autistic individuals. This is something many of us learn from an early age even before we are diagnosed. Often it is used as a survival mechanism, a way to blend in, and a way to make friends or maintain employment. Masking is very exhausting and can actually cause harm.

I want to pull together all these statistics plus all the hurdles plus all the disparities and connect that to the feeling of what Mask Wolf sings about in his song “Astronaut in the Ocean”. 

Lyrics [Chorus]:

What you know about rollin’ down in the deep?

When your brain goes numb, you can call that mental freeze

When these people talk too much, put that shit in slow motion, yeah

I feel like an astronaut in the ocean

Mask Wolf explained that he was dealing with a severe case of depression when he put this song together and that the title of this song is an analogy. Astronauts train for being in space by performing similar tasks underwater in deep pools. Through the metaphorical use of language, Mask Wolf described his depression as “deep” like what one would envision at the depths of the ocean. He also describes why he “feel(s) like an astronaut in the ocean”, with the astronaut being himself and the ocean being symbolic of the overall, encompassing anguish he is experiencing.

As a late diagnosed female autistic person with co-existing conditions who has a long history of underemployment and lack of income even though I am highly educated, I struggle with the ongoing feeling of being lost, falling in this void with no handholds to grab onto to help ground me to the present time. I have Complex-PTSD from years and years of experiencing trauma in one form or another.

April is known as Autism Acceptance/Awareness Month. I ask that we, as a society, do a little less awareness and a little more acceptance when it comes to the issues that so many autistic people face every day of their lives. Through acceptance, we, as a society, can work towards real action in improving the lives of autistic people rather than just being aware that we exist. And, yes, there are a lot of us out there in many forms. Please stop seeing us as a burden or unemployable or unwelcomed due to our mental health condition, gender, sexuality, or color of our skin.

Thank you.

Breathe

My anxiety is ramped up and it is never one thing. There are many different variables feeding in my anxiety right now. These variables are outside of me, so I have no control over them. My counselor has told me that I need to focus on self-care. It is difficult to focus on self-care when you feel frozen, and your body is telling you to hide.  

I understand logically where my anxiety is coming from. Unfortunately, this doesn’t make it any better. My brain is trying to protect me by trying to dissociate while at the same time I am trying to stay present. There is an internal war going on resulting in me feeling like I am being pulled and stretched. This internal war is manifesting in physical symptoms – nausea, dizziness, brain fog, feeling like I am in a tunnel and my head is being squeezed and feeling hot at the same time.

The fight, flight, freeze, or fawn response is our body’s natural reaction to a perceived threat. For me, the flight and freeze responses are typically what my brain does. I also fawn. This is a learned response from when I was a young child. For me, safety is everything. It was this way as a child, and it followed me well into adulthood. Fighting was not possible for me when I was a child, at least, not in any typical since. I kept quiet and tried to keep myself unnoticed. I did what I could to keep people calm around me.

I am currently 46 years old, and I fight now, but in a very control and purposeful way. I learned how to say “no” as an adult in my 30s. I learned about healthy boundaries and how to protect them in my late 30s. This is when I was able to begin the journey of healing from my trauma.  

I have written many times over the years about my Complex-PTSD. I have recently learned that my flashbacks are from even farther in the past. My reoccurring nightmares that I have had since I was a child has been due to a medical trauma when I was around eight years old. My brain blocked out much of the information, but not the emotions attached to the trauma. I continued to have additional medical traumas as an adult which attached themselves to my original medical trauma as a child. Since I had not processed the original trauma that I had as a child, I kept responding emotionally to the additional traumas from the point-of-view of that same terrified little girl.

Adults like to say that children will forget when they experience bad things. I have concluded that adults say this to make themselves feel better about the situation, because children remember. Children might not remember everything, because their brain will do what it can to protect them, but it can’t block out everything. I am a prime example of that. There is a void in my memory when my original medical trauma happened, but the fear, emotional pain, and the memory of the way my body felt from the trauma remains.

Here is more information about Complex-PTSD –> Complex Post Traumatic Stress Disorder (C-PTSD)

Everyone grieves in their own way and in their own time. The healing journey is as unique as each individual person is. Recently, I found myself at a point in my healing journey where I could finally express an emotional issue to a particular person. I had not planned for the letter to develop the way that it did, but it worked. My connection to this person was through music and my brain decided to focus on the music that we shared. I had never written a letter in that way before.  My words came out smooth. I was able to stay present and express myself in an emotional way that was clear. The person I sent the letter to has yet to respond. When I brought this up to my counselor, she reminded met that I wrote the letter for myself, not for the person, so getting a response was not the goal. Releasing what was demanding to be heard was the goal. I achieved that. I know this, because I don’t feel the urgency to share the emotional issue that was trying to come out.

Being able to effectively tell my story is part of my healing journey.  For too long I was frozen in place, or I hid. I didn’t feel safe. I did what I could to protect myself. My freeze and flight responses did exactly what they needed to do in those moments in my life. These responses kept me alive.

I am now in a safer place in my life. This has created a space where I can focus on healing. When my anxiety increases, I close my eyes and breathe. I say out loud one thing I hear, one thing I feel, one thing I taste, one thing I smell, and one thing I see. This helps to ground me in the present.  I remind myself that I am safe. When my anxiety gets to the point of panic, I allow myself to hide with my phone and then I reach out to a trusted person who can talk me down. Sometimes, I just need to be reminded to breathe.

I have incorporated music and song titles into many of my posts. Here is another:

Breathe Lyrics (video)

[Verse 1]
I hear the sound, echoes beneath
Angels and skylines meet
And I’m straining to reach
The light on the surface
Light on the other side

[Pre-Chorus]
I feel the pages turning
I see the candle burning down
Before my eyes, before my wild eyes
I feel you holding me
Tighter, I cannot see
When will we finally breathe?

[Chorus]
Breathe
Breathe
Breathe
Breathe
Breathe
Breathe

[Pre-Chorus]
And I feel the pages turning
I see the candle burning down
Before my eyes, before my wild eyes
I feel you holding me
Tighter, I cannot see
When will we finally breathe?

[Chorus]
Breathe
Breathe
Breathe
Breathe
Breathe
Breathe

[Outro]
Breathe
Breathe
Breathe
Breathe
Breathe
Breathe
Breathe

What does it mean to be me?

What does it mean to be me?

This is a question I have been pondering for quite some time now, years in fact. The question was first posed to me as I neared the time where both my children were getting ready to leave high school. When this question was first asked, I didn’t know how to answer it. That was two years ago. This past fall, both my children moved into college housing about a month apart of each other and I was slammed with Empty Nest Syndrome.

When I mean “slammed”, I mean feeling like my heart has been ripped out and nothing makes sense anymore. It hit me hard. Lots of crying and feeling helpless. Questioning my very existence as to what I was going to do now without my kids being around. Depression, grief, sadness, anxiety – big messy mama, while at the same time trying not to become completely unglued in front of my kids. They were stressed out already as it was. They didn’t need the added emotional stress of their mother as well.

I have written about how Empty Nest Syndrome has affected me – -> Strange Trip (October 15, 2021).

Here are 20 Tips for Making the Adjustment to Empty Nest By Natalie Caine

As we approach the Thanksgiving Holiday in the United States, it will be three months since my son has been home and two months since my daughter has been home. The empty feeling has not gone away yet. There are pieces of me missing, at least it feels that way. I have been a mother for almost 21 years. I raised my children by myself. I homeschool them as well while working multiple jobs. I worked diligently with both their care teams as we learned how to navigate a society not designed for them, or me, for that matter.

All three of us are autistic with mental health challenges traveling on our own paths towards recovery from trauma. We became a tight unit of three working as a team to make it through each day. We did this for nine years. During that time, I did my best to prepare them for independent living while also doing what I could to protect them. Empty Nest Syndrome is hard enough, then mix in the fear parents carry when their child with multiple disabilities moves away for the first time. This has been me times two.

In two days, both my children are both arriving on the same day on two different busses an hour and a half apart from two different directions. I feel both excitement and anxiety to have them both back home. The excitement I understand, the anxiety I don’t. I have hardly slept these last two nights. I feel fidgety and full of nervous energy. Is this normal? Or is this my autistic-self worried about something related to becoming overwhelmed with them coming home?

I have run into these types of questions many times since I was diagnosed almost ten years ago. Is this something everyone experiences or is this something related to my neurology? I ask these questions a lot because I really don’t know.

My oldest with be 21 in December. I have been a parent for over two decades. Raising my children, getting them through high school and into college on a path towards their future dreams has been my single focus all these years. Both my children achieved this the same year during the height of the COVID-19 pandemic. They spent their first year of college attending online. I could still provide support, just in a different way. I am no longer their main homeschool teacher creating the curriculum for them. Instead, I became their supportive decision maker and helped schedule out their workload at home to reduce the likelihood of early burnout. Basically, I was still doing similar work that I had been doing, just in a reduced capacity. I was completing my second Master of Education at the same time, so this worked for me.

This is the first school year where I am not doing anything school related for them nor am I in school myself. I also don’t have a contracted teaching position. I started my own education consulting business while also substitute teaching, but it is not the same. This is a whole new frontier for me, and I am paving the way as I go, no structure, no premade path, just me allowing myself to be me. But what does that mean?!?

I have been told that I am more than a mom and more than a teacher. So, who am I?

I am currently a fiancée and will become a wife again this summer, but I am more than someone who is soon to be married.

I am 46 years old. I have a long history of defining myself based on what I am to other people:

• Mother
• Teacher
• Wife
• Sister
• Daughter

Ten years ago, I started including my neurology in that definition of self:

• Autistic
• Social Anxiety
• General Anxiety
• Complex – PTSD
• Dyscalculia

After my first marriage ended nine years ago, I felt so out of place and was only just beginning to understand what it meant to be openly autistic, so I started exploring the concepts of gender and sexuality and what it meant for me:

• Cisgender
• Demisexual
• Hetero-romantic

Around the same time, I began working more in the disability and mental health fields:

• Advocate
• Support Person
• Coordinator

What about me as an individual? This got me thinking about my personal strengths:

• Artist
• Creator
• Problem Solver
• Writer
• Curriculum Developer
• Organizer
• Painter
• Sculptor
• Designer
• Empathic
• Caring
• Compassionate
• Understanding

What about my other personality traits? My quirks and interests:

• Introvert
• Need Routine
• Need Schedule
• Need Order Over Chaos
• Executive Function Issues
• Sensory Needs
• Stoicism
• Literal Thinker (not understanding sarcasm)
• Academic Person
• Nerd
• Science Geek
• Gardener
• Cat Person
• Runner
• Outdoors Person

There is a lot listed here. This list reminds me of the Doctor Who quote from when the Tardis was a woman. To paraphrase, people are so much bigger on the inside. I forget this about myself sometimes.

[Image description: Three still images from the show Doctor Who, episode “The Doctor’s Wife”. Two people talking, a man and a woman.
First still – woman asks. “Are all people like this?”
Second still – man asks, “Like what?”
Third still – woman answers, “So much bigger on the inside.”]

I am more than the expectations that I place on myself. I have worth even when others don’t see it. I am a highly educated and highly trained individual who has a lot of skill and a desire to give back to my community. I just need to do it in the way I need to, unconstrainted by societal rules that aren’t designed for someone like me.

After writing this, that anxiety that I have been feeling seems to have calmed down. It is still there, though. I want to see my children, but it will be hard to say goodbye again. The world I live in now will be excitedly returned to a former state, but then flipped again in a week’s time. Empty Nest Syndrome is not something that can be quickly gotten over.

I have a list now of how I can define myself separate from being a mother. I am still not comfortable making that separation yet. Being a mom has been the most exhausting and most rewarding part of my journey. I wouldn’t trade it for anything. I will always be a mother, that will never change. I need to take the time to build up the other parts of myself, though, because being a mother is only part of my story, a very important part, but still a part. I helped my children grow and blossom. I need to be brave and take those unknown steps beyond being a parent as my children are taking their first unknown steps into adulthood.

**Deep Breath**

Here I go . . .

Strange Trip

What am I doing?

This is how I feel. So many changes over these past two months. My system is overloaded. No wonder the panic attack happened. Too much!

Both my children moved into campus housing a month apart from each other – one three hours away and one eight hours away. They both have been struggling with the transition for different reasons. Being hit with empty nest syndrome all at once was a huge blow to my emotional and mental wellbeing. I also moved in with my fiancé. Yes, I am getting married, but not until Summer 2022. Two of my cats passed away – One from old age who had a stroke and the other from an undiagnosed autoimmune disorder that the vet couldn’t effectively treat. While this was all happening, two kittens (about 4-5 months old) were found living under our house who had been apparently dumped. It has been a month and we have only just been able to get one inside. The other keeps evading our traps and will not get close enough to be picked up, but he/she comes to our back deck looking for food every day. I am also starting my own education support/consulting business while working a part-time teaching job.

This has all happened in a period of two months!!

I am exhausted and my body is fighting me. Motivation is down to nothing and all I want to do is crawl under the covers and binge watch something online.

Transitions are hard in general. Transitions can really suck. Other times they are welcomed and full of excitement. Then there are the times where it is mixed.

I home schooled both my children for six years. Raised them on my own. Focused heavily on them learning independent living skills all through their high school years. They both were accepted to their first-choice schools on academic scholarship. Their freshman year in college was attended online due to the pandemic. Where they are now is what we had been working on all these years. I am so proud of them, but also sad. I am grieving. Empty Nest Syndrome is so strange.

“Empty nest syndrome refers to the distress and other complicated emotions that parents often experience when their children leave home.

Of course, people want their children to grow up and lead independent lives. However, the experience of letting go is often bittersweet or emotionally challenging. Parents may feel lonely, sad, and have some degree of grief when their children leave the nest, whether it’s to live on their own, start a college career, or pursue their own relationships. Women normally suffer more than men do, and feelings of sadness may be more pronounced among stay-at-home parents whose lives were organized around meeting the everyday needs of their children.”

– Psychology Today

What am I doing?

I have been told that it is my turn now, that I can do whatever I want.

Um . . . ya . . . about that . . . hmmm . . .

Throughout my life I had goals and a path to follow. The path was already there based on societal expectations for achieving my desired goal. I knew I wanted to become a teacher at seven years old. I followed the path as dictated to me. My children each have their own dreams, so I made sure that they met all the requirements in order to graduate high school and get into college so that they can reach their dreams. Those pathways were dictated to me, requirements set forth by the state and schools.

Now I find myself in a place in my life where there is no path already there for me to follow to my next goal. This is uncharted territory for me, and I am feeling lost. I am an autistic person trying to lay out a life path without a predetermined structure. My current goal is to become self-employed creating my own structure and rules to follow. This is a scary place to be in, but also an exciting place to be in. Another strange situation where I am feeling dual emotions towards.

The one thing that I feel confidant about is my relationship with my fiancé. I have been a single mother for nine years, seven years officially. My ex is not involved in our children’s lives. My children basically grew up without their father. Six years would pass after the divorce finalized before I even attempted to put myself back out there. I was fortunate. We met online through a dating app right before the pandemic hit and we have been together since. The path towards trust for both of us has been slow, but necessary. To be in a healthy romantic relationship has been amazing and not something I am used to.

My fiancé is not autistic, and he has three of his own children with one living with us. We are already referring to each other as stepparents. Not only has my fiancé taken the time to learn about my autism, but he has also taken the time to learn about my children’s autism. He took the needed time to connect with them on their level while keeping in mind the trauma they endured by their father. He didn’t rush or push or insist that things had to be a certain way with him. Both my children are afraid of older adult men due to their father’s behavior over these many years. By taking the time to learn, and showing patience and compassion, my fiancé now has two young adult stepchildren who have learned to trust him.

What am I doing?

I am starting a new life and I don’t have a plan or a path or instructions. Not an easy place to be in when you are an autistic person. I don’t know what I am doing. I am writing the rules as I go, creating something that isn’t confined by a predetermined course of action. This is indeed a strange trip!

Source:

What A Long Strange Trip It’s Been | Jeremy Brooks | Flickr

Ch-ch-ch-changes!!

Changes  . . . Changes can be very difficult to navigate, especially for those who rely on routine and consistency to manage their daily lives. I have been living the last nine years of my life in what seems to be a constant state of flux.

My old teaching position was cut to less than half time due to budget constraints. This led to us having to move to a new area in a different part of the state, because we couldn’t afford the mortgage anymore and we needed a better school system for our children as well as be closer to their services. I went back to school to complete my first Master of Education degree. Shortly after, my ex-husband decided to leave us, stating that he didn’t want the responsibility of a family any more.

All of a sudden I found myself a single parent to two children with multiple disabilities who had been neglected and then abandoned by their father. I was in graduate school and working multiple part-time teaching positions. At this same time, both my children were no longer able to attend public school due to their trauma. This led to me becoming a home school teacher for six years on top of all the other things I was doing. I was barely able to pay rent each month and it was a struggle to afford enough groceries plus I had my own physical and mental health challenges that I was working through.  I was only newly officially diagnosed at 36 and I was only beginning to understand what being autistic even meant!

Are you newly diagnosed?–> Where do we go from here?

These masks help me appear functional to those around me. They also hide my stress and fear as well as allow me to appear stoic. My “stoic mask” is the one where I can only seem to take it off in private. To remove this mask in public would put me in a vulnerable state that I am not comfortable nor ready for society to be witness to.  My “professional mask” is a necessary one that allows me to appear confident and knowledgeable in my work place even when self-doubt creeps in. My “mom mask” lets me be more of myself, but I still need to maintain a sense of strength, resilience, and composure. My children are trauma survivors as well and I feel I need to be stable presence for them.

As a medical trauma and domestic abuse survivor, this uncertainty in my life led me to be stuck in a perpetual state of fight/flight/freeze/fawn. This is an exhausting state to be in. Just being able to truly relax is a luxury that I have rarely been able to experience.

In order for me to start coming out this exhausting state, safety must be established first. When I feel safe to be myself, then I can start taking off my masks.I can be more myself with my life partner. Without even realizing it, he projects a sense of safety by just being himself. I can breathe a sigh of relief when I see him, because, when it is just us, I can take much of the weight of my masks off. I can be more of myself in a way that I don’t feel I can in other situations.

He was one of the changes that came into my life over a year ago that I had to learn how to navigate through. I hadn’t been in a serious relationship in a very long time and I wanted this, so slow and steady we went. While at the same time this was going on, COVID-19 hit. The joke became “finding romance in the time of a plague”, but we did. Now we have blended family days once a week with both our children together for a family dinner, games, or a movie.

More recent changes that have happen involved graduating with my second Master of Education degree. This lead to a new job in a field that I was familiar with, but had not directly worked in before. I am still working with schools, but more coordinating community, home, and school services into a structured supportive unit.  This change has allowed me to combine my three education degrees. Unfortunately, even after three weeks, I am still struggling to find balance in my life/work schedule with this new work routine as well as getting used to working in a more office-based setting rather than a classroom.

Fortunately, the office has three large windows and my office mate appreciates that I like the lights turned off. My office is also on the second floor, so I don’t have to listen to people walking above me on hardwood floors. I still, however, am on edge when I hear people walking around on my floor, because I can’t see them and have no idea if they are going to open my door. This is where that fight/flight/freeze/fawn response is still on high alert. I hear footsteps coming towards my door and my body jumps. Not fun!

Even with the sensory issues, I am looking forward to this full-time job. I have been unemployed or underemployed for much of my career. Teaching is a difficult and stressful career to be in for anyone, and then add in an environment that is typically not conducive to the needs of an autistic person. School teams struggle just to get the needs of autistic students met. Traditional school settings were not designed for neurodiverse students and teachers.

I have been in a consistent state of burnout since I started my career 22 years ago.  Learn More Here–> Ever Present Exhaustion.

The education system in the United States is broken and has been broken for generations. I have tried to fix the system while as a classroom teacher. I couldn’t. I tried to fix the system as a Parent Resource Coordinator working on the edges, but still in the system. I couldn’t. Now I am working in a position that has taken more out of the system with the goal coordinating care for youth with behavioral challenges, which involves the system, but with a community focus. 

Part of the job requires that I have lived experience working with mental health services. Both my children have been receiving services for 12 years. They are both in college now and have taken over their own coordination of care. This brings me to another change that we, as a family, will be facing in the fall. Due to the pandemic, both my children completed their first year of college online while still living with me.

We are all vaccinated now and the universities that my children attend are opening up their campuses once again. They both need to move into the dorms in the fall. This means one child will be moved to the western part of the state and the other is being moved to the southern part of the state. As a mother, this terrifies me, but I know I need to let both of them spread their wings and live their lives on their own terms. My job is to provide roots for them and continue to be their Supported Decision Maker for as long as they need me to be.  I wrote more about my fear as a mother in 2019 –> The Love of a Mother and the Pain of Transition.

Changes  . . .  I know there are still more to come. Life is not static. Life is a dynamic and ever evolving journey.  According to Songfacts, David Bowie’s Changes “is a reflective song about defying your critics and stepping out on your own.” I have realized that I have been working through this process of defying the external and internal critics in my life and figuring out how to step out on my own that allows me to be truly me.

I still have work to do, but I feel more grounded, more present (not disassociated), and more confident in my abilities than I can remember. Long story short, I feel more comfortable in my skin than I ever have.  This is another change in my life, a change that I am embracing.  The feeling that comes with this change is one I have been working towards since I started my journey towards healing and self-acceptance. I had no idea what this feeling would actually be like. I have had no experience with it prior to now, but it is a welcomed change. I am looking forward to seeing where this particular change takes me.

“The journey is never ending. There’s always gonna be growth, improvement, adversity; you just gotta take it all in and do what’s right, continue to grow, continue to live in the moment.”

– Antonio Brown

Why I Run

I have been an active runner for 27 years. We hear about the benefits of running, such as running adds years to your life, that it helps you sleep better, that is helps you lose weight, and keep it off, and that it improves mental health, and reduces depression. These are all great reasons to become a runner, and reasons that started me running, but these are not the reasons that have kept me running. 

My mother has often told me the story of when I was around two or three years old I would take off running. At the time, my family lived in an old farm house on some property in the country. According to my mother, I would take off running through the long grass and wild flowers with our German Sheppard following and me giggling and laughing the whole time. My mother has told me multiple times how scared she got when I would run, because she couldn’t catch me, and how she thought me laughing was at her expense. I have no memory of this time, but I have seen photos of the property. Even thinking about it results in my body aching to run in those fields. This tells me that I wasn’t running and laughing at my mother’s expense. I was laughing because it felt so good to run.  

I am 45 years old now. I have gone through two complicated pregnancies that left me on bedrest for months. I have had joint problems for as long as I can remember and have been through physical therapy ten times since I was 14 years old. I have a very long reoccurring injury list involving my connective tissues. At 18, I was told if I let myself get out of shape, I would lose my ability to walk. At 27, I suffered a major medical trauma due to complications with my second pregnancy. I was almost paralyzed, and even after 18 years, I am still bleeding internally. Luckily, my son was born healthy. My body gave everything it could to keep him alive until term. 

At 37, I was told the only thing holding my body together anymore were my muscles. My bones are essentially floating. I am more like Gumby and less like Elastic Girl. I have been in chronic pain since I was a teenager and the pain has only worsened over the years. On 1-10 pain scale, I operate daily at about a six. My pain is typically like fuzzy noise in the background. I know that it is there, but I have adapted and learned ways to keep functioning. There are days that my pain is at an eight. When this happens, I am forced to take notice of it, slow down, and rest.  If my pain continues at an eight past three weeks, and none of my pain management strategies are working, or if my level jumps higher, then I know I need to go back to the doctor.

I have Ehlers-Danlos Syndrome. I was born with it and there is no cure. My body can’t make enough collagen to bind my cells together properly. Due to my sensitivity to pain medication, including any medication that affects the chemistry of my brain, I am unable to use medication to manage my pain. I am allergic to narcotics, otherwise known as opioids. I receive no benefits from these types of medications. My pain management regiment consists of rest, ibuprofen, ice, and many different braces that not only support my ligaments, but also provide compression to areas where my tendons have degraded. Ehlers-Danlos Syndrome has also affected my connective tissues that support my organs. The Volcano is Awake was my attempt at telling my story about my medical trauma. My writing is chopping, because I was crying as I wrote it. I am still on my journey towards healing. One day I may even be able to fix my writing, but I am not to that point yet.

I love to run. Running helps ground me when my anxiety is racing. Running helps me release tension so that I cry. I run in rural areas so that I can scream at the trees. Trees are very understanding. I also run to keep myself out of a wheel chair. Running keeps my muscles strong. My physical therapist doesn’t even me to stretch, because I am already limber and I need every bit of stiffness I can get to help my muscles hold my bones in place.

Research shows that there is an overlap between people with Ehlers-Danlos Syndrome (EDS) and autism. This doesn’t mean that all autistic people have EDS. These are coexisting conditions and can exist on their own in individuals. However, this overlap is certainly true in my case. I also have thyroid problems and autonomic nervous system issues. These two conditions overlap with EDS as well. According to a study done by Kindgren, Perez, and Knez (2020), “Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) are both characterized by generalized hypermobility, in combination with pain, affected proprioception, and pronounced fatigue. Clinical observation indicates that behavioral problems, hyperactivity, and autistic traits are overrepresented in children with those conditions.”

For additional information, please go to The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders.

What does this mean for that little girl who giggled and laughed as she ran through the fields and had no idea at all of what the future would hold for her?

It means that I have been autistic all my life even though I wasn’t officially diagnosed until I was 36 years old. It means I have always had EDS even though it wasn’t officially diagnosed until I was an adult and had already started accumulating a long list of injuries. It also means that I have had a love of running since before I can remember.

Running helps me feel free, like I am flying. When running, all my senses seem aligned allowing for calmness to settle in. While running, the overwhelming world that I live in seems to drift away and is replaced with the feeling of the breeze on my face, the ground beneath my feet, the steadiness of my breathing, and the sound of the birds and the wind through the trees. Running is how I meditate. Despite all the barriers I have faced in my life, all the pain I continue to endure, I have always found ways to keep running. I am a runner and will continue to run for as long as I can.

“Truly, I love running. It’s who I am. It’s a part of me. Even if I can only run for 10 minutes, I feel whole and happy. And if everything else is falling to pieces, I go for a run, and I feel like things are going to be okay.” – Johanna Olson

For Many With Autism, Running Is a Sport That Fits (Video) – “As opportunities for training and racing grow, runners such as Tommy Des Brisay are seeing results they never anticipated.” – Runner’s World

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.

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

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.