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.

Statement of Transformation: A Personal Journey

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

—————————————————————————————–

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

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

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

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

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

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

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

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

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

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

References

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

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

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

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

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

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

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

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

To My Son

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.

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.

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

The Facts on Children and Domestic Violence

Midnight Thoughts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Autistic Energy – A Depletion of a Person

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

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

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:

• Ronnie Pinder who wrote Autistic Fatigue
• Emily Swain who wrote Autistic Burnout: An Often-Misunderstood Element of Autism
• Kieran – The Autistic Advocate who wrote An Autistic Burnout
• Ryan Boren who wrote Autistic Burnout: The Cost of Masking and Passing  
• Dora M Raymaker, PhD with Portland State University / Academic Autism Spectrum Partnership in Research and Education (AASPIRE) who put together a whole slide presentation called AUTISTIC BURNOUT: “MY PHYSICAL BODY AND MIND STARTED SHUTTING DOWN”

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 11^th, 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.