Category Archives: Autistic Burnout

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

Ever Present Exhaustion

When will the fatigue end?

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

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

Being Emotionally Exhausted – posted on February 27, 2014

Exhausted All The Time – posted on March 16, 2014

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

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

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

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

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

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

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

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

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

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

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

More about abuse:

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

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

cycle-of-abuse

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

I know better now, but the damage was done.

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

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

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

Midnight Thoughts – posted on April 28, 2020

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

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

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

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

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

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

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

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

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

Fractured, but Intertwined

glass-4787656_960_720

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

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

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

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

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

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

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

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

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

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

Autistic Energy – A Depletion of a Person

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

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

Exhausted Pigeon

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Productive Rant

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

Rolling Dice

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

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

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

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

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

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

Our Education System

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

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

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

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

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

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

I am digressing . . .

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

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

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

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

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

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

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

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

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

As of 2015 the U.S.:

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

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

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

Inequality

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

Poverty

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

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

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

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

 

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

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

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

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

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

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

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

So, what’s the point?

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

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

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

But, I am so tired . . .

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

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

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

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

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

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

 

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

 

To Those Who Still Don’t Understand

(Content Warning: medical problems, references to death, suicide, murder)

I came across an article by Sarah Kurchak today, entitled To Neurotypicals On My 36th Birthday and it really resonated where my thoughts have been lately.  I commented on the article, but I felt I needed to expand my comment.

I have tried to live a healthy life style all my life.  I don’t drink alcohol, I don’t smoke, I don’t do recreational drugs, I try to eat right, and I am I runner.  Unfortunately, the statistics are not on my side.  Due to my genetics, my life expectancy has been shortened. 

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 was diagnosed when I was 36 years old. This is the same age that the article is focusing on, the same age that the researchers CNN cites say is the average age that people like me die. 

I am a teacher and have been for almost 20 years. During the 2011-2012 school year, the same year I was diagnosed, my doctor told me that my stress was actually killing me. This is why I don’t have a classroom of my own anymore. I was very fortunate to be able to find employment where I can work predominately from home, but still keeps me in the education field. I don’t know if I will ever be able to return to the classroom on a regular daily basis.

Due to EDS, my body has been falling apart all my life. I have been a runner for 24 years. It has kept me out of a wheel chair. I had to stop backpacking and weight lifting long ago. I have had to garden in pots for years now (doctors’ orders). I am not even supposed to push a grocery cart anymore, because the right side of my diaphragm is no longer securely attached.

I don’t know how much longer my body and mind can take. Stress can literally kill you. I am so tired. I do know that whenever I just what to collapse, my body won’t. It has got a lot of fight in it still, though. When everything went to hell at 21 weeks when I was pregnant with my son, my body gave everything it had to keep him alive. He was born healthy and to term. That was 15 years ago and my body has never fully recovered. I am still bleeding internally with significant nerve and tissue damage.

I am 42 years old now and I don’t know how much longer I have. So, I will just keep carrying on the best I can with the time I have.

Looking through my old writings, I see that this carry-on-attitude is found all over.  I mean, what else can I do, but to keep moving forward? I am a single mom for two teenagers.  I don’t feel there is much choice in the matter.  The only other option that I see is giving up and dying.  My resilience is too strong, which I explain in “Strengths of Autism – Resilience”.  My body won’t let me give up, so I keep going. 

In The Hidden Meaning Behind “I’m Tired”,  I explain that the phrase “I’m tired” is just a cover for a long story of struggle, confusion, stress, frustration, pain, and exhaustion.  I am always tired.  It never seems to go away and it has only gotten worse as I have gotten older.

In September 2017, I came across this meme with a quote by Dr. Shana Nichols:

Females with ASD“Females with ASDs often develop ‘coping mechanisms’ that can cover up the intrinsic difficulties they experience. They may mimic their peers, watch from the sidelines, use their intellect to figure out the best ways to remain undetected, and they will study, practice, and learn appropriate approaches to social situations. Sounds easy enough, but in fact these strategies take a lot of work and can more often than not lead to exhaustion, withdrawal, anxiety, selective mutism, and depression. -Dr. Shana Nichols”

How long can a body maintain a perpetual cycle of burnout, stress, and pain? 

I really don’t know. 

Something my children’s psychiatrist told us this past week:

ARC – Autistic Renewal Cycle

ABC – Autistic Burnout Cycle

They need to acknowledge ABC, but focus on ARC. Both are in ABC right now. As a family, we need to find ways to break the ABC using ARC.

I have struggled with ABC for so long. Every year I would find myself in some level of autistic burnout. I need to break the cycle, too.

What the ARC looks like depends on the individual. Basically, an individual needs to be encouraged and provided opportunities to do activities that fuel them, that give back emotional currency.

Being stuck in ABC can potentially shorten a person’s life.  The cycle must be broken, but that is not a easy thing to do.  How does one fuel their emotional currency?

Personally, I feel it has a lot to do with acceptance.  I feel acceptance is the greatest gift you can give to a person. 

According to Rick Hanson Ph.D.:

“Accepting people does not itself mean agreeing with them, approving of them, waiving your own rights, or downplaying their impact upon you. You can still take appropriate actions to protect or support yourself or others. Or you can simply let people be. Either way, you accept the reality of the other person. You may not like it, you may not prefer it, you may feel sad or angry about it, but at a deeper level, you are at peace with it. That alone is a blessing. And sometimes, your shift to acceptance can help things get better.”

Acceptance is an action and it requires work.  Kassiane S. explains this concept beautifully in Acceptance vs. Awareness:

“Acceptance comes from a place of understanding.  Understanding isn’t generated by soundbites and posterchildren. Understanding takes work. To accept us, people first need to acknowledge us as individuals-as three dimensional, growing, developed characters. We are not all the same, and we are not but a collection of deficits. Acceptance is seeing that-and seeing that one’s distaste for an autistic person is more likely than not because of “autism”. Awareness tells you that anything objectionable about us is “autism”, but that explanation is clear, simple, and wrong.

Acceptance requires facing that which makes you uncomfortable about us, thinking about why it makes you uncomfortable, and confronting any prejudice at the root of that discomfort. To accept us is to make a conscious effort to overcome that prejudice, to recognize that your discomfort with our differences is far more your problem to overcome than ours.”

In Accept Them As They Are, Dr. Hanson continues to explain how you find acceptance:

“Consider how you have gotten tangled up with this other person, struggling to change them. When I do this myself, I become aware of my own rightness, positionality, judgments, pushiness, irritability, narrow views, hurts, longings, grievances, or remorse. See if you can let go of some, even all of these entanglements. Open to the easing, relief, and peace that can come when you do.

Also consider how much you like it when you feel that another person accepts you completely. It’s a beautiful gift – and we can give it ourselves to others when we accept them. Imagine how it might improve your relationship with someone if that person felt you accepted him or her fully. Acceptance is a gift that gives back.”

I am so very tired of fighting just to survive. I explained this in So, how does it feel to actually live your life as opposed to just surviving?  I chose years ago to live in the moment, because I don’t know how any moments I have left. 

When people want to push the idea that there is a supposed autism epidemic (there isn’t), I have found the question that will inevitably come up is, “If there is no epidemic, then where are all the autistic adults?”

Autistic adults are there and have been there since there have been people.  From what I have learned, autistic adults seem to disappear either by choice or design.  As they age, they either remove themselves from society to get away from the unrelenting life killing stress or they die at a much younger age than non-autistic adults.  The question really should be, “If autistic adults have always been there, then why are you not seeing us?”  

In closing, I would like to reiterate what Sarah Kurchak stated in her article about what to do if you want to help and add a few words of my own.

  • Listen to us.
  • Believe in us.
  • Let us be our authentic autistic selves.
  • Invest in our work.
  • Invest in science and actions that actually make our lives better now instead of chasing a hypothetical cure.
  • Meet us halfway, we can’t do all the work to conform to your world. Compromises need to be made and bridges need to be built. Help us build that bridge.
  • Tell us you accept us and mean it!
  • Tell us we don’t bore you.
  • Tell us we don’t drain you.
  • Tell us we are not broken.
  • Tell us we are not a burden.
  • And above all, don’t kill us.

Personal Responsibility, Self-Advocacy, Education, and Support

On November 26th I wrote about Finding Hope. That writing was part of my Wellness Recovery Action Plan (WRAP) that my Peer Support Specialist is helping me put together.  The “hope” portion was only the first part. There are four other concepts to this writing that I needed to figure out what their meaning was to me.  These remaining concepts were easier for me to write about than writing about “hope”, but my writing didn’t turn out like I thought it would.  Instead of separating these last four concepts out, I ended up combining them all in a long narrative. 

It has taken me years to write my story. A bit here and a bit there. So much struggle.  So much pain. When I was first diagnosed with PTSD, it was recommended to me to get my story out to help with my healing process, but I just couldn’t.  This is why it has been so difficult for me to conglomerate every thing that has happened to me.  I made an attempt in June of 2015 to combine everything up to that point when I wrote The Volcano is Awake. I cried writing it.  It reads choppy, but it seems every time I try to write my story that happens.  I am still trying to heal. Healing takes time and how that healing plays out is different for everyone.  My ability to write to the point at which I have is quite an achievement for me, because for so long I couldn’t even do that much. 

In this second part of putting my WRAP together, I was faced with determining what personal responsibility, self-advocacy, education, and support meant to me. As I stated before, I was not expecting my writing of these concepts to turn out like it did. I am not sure what that means, per say, but I think it demonstrates where my processing of things are, where my focus is, and where I am in my struggle to heal.

So, here it goes. Some of this writing is repetitive information from past blogs, some of it is not. This is me putting my story out explaining my ongoing journey to wellness.

I am stretched quite thin and have been for some time. My responsibility to others, particularly my family and students has led me to neglect my own self-care.  The one thing that I promised myself when I was 18 years old was that I would run as often as I could and I have kept that promise through two difficult pregnancies and countless injuries.  I have always lived an active healthy life style, even when I was a child I was active.  I have strived to keep my body strong and healthy and it has served me well. 

I was born with a congenital condition that has been slowly destroying all my connective tissues. My body cannot produce enough collagen to bind my cells together properly.  The only way to be diagnosed with this condition currently is by keeping track of years of injury, and just not any injury.  I am talking about joint injury, bleeding and bruising problems, and organ prolapse.  I have a long list of injuries and surgeries that a person my age with long history of living a healthy lifestyle wouldn’t expect to have.

During my high school years, just prior to my first surgery, I was told by my doctor that if I let myself get out of shape I would lose my ability to walk. My joints were already that lose and dislocating. At 27 years old, after the birth of my second child, I was told that the only thing holding my body together anymore were my bones and muscles.  At 38 years old, I was told that only my muscles were holding my body together anymore.  I am currently 41 years old and my bones are now essentially floating in my body. It doesn’t take much for them to move out of place and cause considerable pain.  It also doesn’t take much to injure myself.  Just doing everyday things can cause me to end up with an injury that lays me up for days or weeks. I have to be very conscious of how I move my body.  I have to keep my upper body always aligned with my lower body and that is not an easy thing to do.    

I have been in physical therapy eight times since I was 14 years old. I have been told to stop running for years, but I refuse. My physical therapist doesn’t even try to tell me to stop running anymore.  He says now that, yes, running is hurting me, but it is also keeping my body strong, which is needed to hold it together.  

Running is also good for my mental well-being. There are days when I go running in the woods and scream at the trees.  I cry. I shout. I let everything out.  By the end of my run I feel tired, but purged of all that stress in my head that was tearing me apart.

I also write. Writing has become my “voice”.  Through the encouragement of another teacher who saw an ability that I didn’t realize I had, who was also a mother of an autistic son and a blogger herself, I found my “voice” for the first time in my life. I was 36 years old at the time I received my Autism diagnosis, which was after both of my children were diagnosed.   I was never taught how to be an advocate or to even how to advocate for myself, but as a parent and a teacher, I figured it out on my own.  Finding my “voice” only empowered me further. 

I now write two blogs, I have a Twitter account, and I run three public Facebook pages plus my private Facebook page. I am also a Founding Member of ANUE (Advocates for Neurodiversity and Unique Empowerment).  ANUE has become primarily an online support and resource group, but there is an option to have face-to-face meetings.  I am in contact with people all over the world through the internet and have meant some really amazing people.  

Would it be better for me to have more contact with people face-to-face?

Yes, I do believe it would, but my situation does not allow for that, so over the last four years I have created a large social network online. It has been a life saver for me, but in times of crisis, more face-to-face support would be better.

Becoming an advocate was not something I decided one day to become. I wanted to be a teacher since I was seven years old. I struggled with the decision of becoming an Art Teacher or a Science Teacher for years, but in eleventh grade I took my first Geology class, and that was my deciding factor.  I was going to become an Earth Science Educator and I did. My dream was to teach science in a public school setting and I did accomplish that.  I have been a certified teacher for 18 years, but I have not held a certified position in four years.  Due to my declining health and responsibilities to my family, my children in particular, I am no longer able to work in a classroom on a daily basis.  I still teach, however, just in a different way than I had originally planned.  This is where becoming more of an advocate comes in.

I went back to graduate school four years ago with the goal of earning a Master’s degree in Science Education. My passion lies in Science and I wanted to continue working in the field of Science Education.  Unfortunately, as always, life happens when you are making other plans.  My marriage collapsed unexpectedly two months into my program.  It was devastating, but I had to carry on for the sake of my children and for myself. 

I managed to make it into my second year of grad school and it was at this point when I began to realize there was a problem. Due to my executive function problems, I needed accommodations to get through the certain classes. My classes were mostly online and the university was in Montana with the requirement that two lab courses had to be completed on campus.   I live in Washington State. The University felt they could not provide the accommodations that I needed to be successful.  I had to make a choice, struggle through knowing that I would eventually fail or transfer into a different University all together.  I decided to transfer to Lesley University in Cambridge, MA. 

My experience with Montana State University and my experience as a teacher, a parent of two children with a variety of disabilities, and with ANUE showed me that my focus needed to be placed where my untapped strengths were pointing me toward, I am a teacher and an advocate and I needed to focus on Autism Education. Lesley University follows Universal Designed for Learning Standards.  Basically, an accommodation that is good for one person is good for all.  The accommodations I needed were already in place and I didn’t even have to ask for them. My experience at Lesley University was amazing and I finished in two years with a Master’s in Education with an Autism Certification.

My hope with getting a Master’s degree was that it would open more doors for employment with the ultimate goal of becoming self-employed. I even have started my business online as an education consultant and tutor.  I have not been able to really focus on it, however, due to the circumstances that my family is currently living in and my own mental health.  Once things start to calm down and become more stable, I fully intend on developing my business more.

Self-employment, a livable house, a place that I can call home, these are all important goals, but I think the biggest goal I have is to be finally able to heal. I have Complex-PTSD and I am in autistic burnout.  I keep pushing and pushing myself each day just to get through.  I am tired of trying to survive. 

I WANT TO LIVE!!

It is going to be a rough ride, though, to actually reach that point of stability where I can actually reach my goals. My support team is going to be such a pivotal importance in the coming years.  

Who are these people who will be that much needed support?

I am so used to struggling on my own. It was how I was raised.  I grew up with very little to no support, particularly in the emotional support department. My emotional needs were essentially ignored. This was very difficult for an undiagnosed autistic child who struggled with debilitating anxiety mixed with depressed states who didn’t have the words to express how she felt nor did she understand those feelings.   I was often told by my parents that their job was to provide clothing, food, and shelter. That was basically it.  I had to learn to make it on my own.  My marriage was like that as well, very little to no support, even during my darkest times in my life.  That situation is improving, however, but very slowly.  

It took me a long time to get myself to a place where I would actually ask for help. I was just so used to being told “no”, that my “voice” didn’t matter, that my needs didn’t matter.  I am more disabled that I even am able to acknowledge to myself, and it is disheartening, but I know I have worth and that I matter. It has been quite a journey getting to the point where I can say that.

I HAVE WORTH!!

I MATTER!!

So, who are these wonderful people who I could turn to for help?

I created a Mind Map to sort that all out. Doctors and counselors (for both my children and I), local friends, online friends, ANUE, immediate family members, fellow teachers and advocates, my pets, there are actually a lot of people and critters listed, expect for my extended family members. My hope is with time the bubble for Other Family Members will grow, but at this time it is not possible.  My parents basically disowned me for reasons I won’t go into here and I am unable to really speak to my sister for reasons that are too painful to discuss right now.  When it comes to learning about the effects of trauma and learning how to adjust my life due to my physical and neurological disabilities, I am a knowledge junkie.  I devour knowledge.  I am forever learning and I have a skill when it comes to researching.  I can find information relatively quickly and present that information in a manner that is easy for others to understand.  I am always looking for answers and new pathways to follow whenever I hit a roadblock in my journey through life.

I am still looking for the pathway that will allow me to get to a point where I can actually live and not just survive. I hope that day will come sooner rather than later.  I am tired, so very tired.

Hear My Battle Cry

Here I am sitting at my lap top again trying to find words and at the same time I am listening to “Battle Cry” by Imagine Dragons.  I am in a battle now, a battle to just hold on, to make it through, and to survive.  Life shouldn’t be this hard.  How did my life get so hard? I will not give up, though.  I will keep fighting. This is my battle cry!

Hear My Battle Cry

I will make it through!

I will survive!

Hear my battle cry!

 

I may be hungry.

I may be cold.

I may be in pain.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

I may feel hopeless.

I may feel lost.

I may feel alone and isolated.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

My body may be taxed.

My mind may be flooded.

My spirits may be shattered.

 

But, I will make it through!

I will survive!

Hear my battle cry!

do-not-give-up

Finding Hope

NOTE:  This blog was originally written as a journal entry for my Peer Support Specialist as part of my Wellness Recovery Action Plan.  It reads somewhat choppy, but I wanted to share it nonetheless.  My children have given me permission to share their medical information as long as I don’t use their names.

(Trigger Warning:  Reference to suicide, emotional abuse, and trauma.)

“Hope is the life force that keeps us going and gives us something to live for. Hope is a crucial part of dealing with life’s problems and maintaining resilience in the face of obstacles. Even a glimmer of hope that our situation will turn around can keep us going.” – Joe Wilner (How We Lose Hope and How to Get it Back)

The word “hope” is defined as a feeling of expectation and desire for a certain thing to happen. I sit here staring at my computer monitor trying to think of things that bring me hope. Where is that feeling of expectation and desire for a certain thing to happen?  I seem to be lacking it.  I am in full-on survival mode and have been for some time. The feeling of hope seems to not be in the equation for me.  

I sit here reminding myself it has been bleak before, I mean really bleak. Bleak to the point where I didn’t want to live anymore.  I was never suicidal, I just wanted the physical and emotional pain to end and I only saw death as a way to finally escape it all.

What kept me going?

My responsibility to my two young children is what kept me going. I refused to leave them without a mother.  They were only a baby and a toddler at the time and they had a father who wasn’t always around and grandparents who only wanted to involve themselves on their terms, which was limited. 

This all happened years before I was diagnosed with Autism, years before we knew both my children were also autistic, and years before realizing my daughter also had Bipolar. Medical trauma, grief, chronic pain, post-partum depression, family neglect, emotional abuse, isolation, lack of a proper diagnosis, lack of support from anywhere lead me into the worst autistic burnout I have ever experienced and without a proper diagnosis I had no idea what was happening to me.  I thought I was losing my mind.  I was diagnosed with PTSD during this time.  This diagnosis would eventually grow into Complex-PTSD.  

I have experienced burnout many times since, but never to the extent of how it was during those very dark, dark days of my late twenties/early thirties. Unfortunately, I am finding myself horribly burnout out again, more so than I have been in a very long time.  I am 41 years old.  My daughter will be 16 next month and my son will be 14 two months after that.  One October night in 2012, my world once again began to fall apart.  My husband, whom I had been with since 1998, sat me down and told me he didn’t want to be married any more, he didn’t want the responsibility of a family any more. 

Things continued to get worse and worse. My husband was self-destructing from a life-long struggle with untreated severe clinical depression and he was taking the family down with him.  I will not go into detail of the three years of hell that my family went through over this, but I will say that my son developed PTSD from emotional abuse by his father.  My daughter grieved like her father had died, yet there was a stranger walking around with his face. 

Fast forward three years, my husband finally agreed to get professional help and has since come home. We have spent the last year trying to rebuild our family.  Five months ago we moved to a very isolated area with dream.  We would build a house together and start our new life as a family, all four of us together.  Unfortunately, life happens when you are making other plans. 

We have been living in what can be described as a glorified shed with tarps for walls. It is the end of November. We have no plumbing or insulation. What electricity we have comes from heavy duty extension cords that are plugged into the meter outside and drugged into the house. We can’t run much on them or we end up popping circuits.  We do have a wood stove, but with no insulation, it can only keep the house just below 50 degrees Fahrenheit, the bedrooms are even colder.  We are miserable.

Due to unforeseen financial problems over the last few months, who knows yet when we will have plumbing. My in-laws’ house is about a football field’s length away. We utilize their kitchen and plumbing. They are very caring people, but their house is small and they are very elderly.  My mother-in-law has had two strokes, is diabetic, has blood pressure problems, and needs round the clock care which my father-in-law provides.  Their house is very unpredictable and stressful.  It is hard to explain, but no one can handle being in their house for more than a few hours. We are looking at another six to eight more months without plumbing. It realistically could be longer than that.

Even though I call my husband “my husband”, we are not legally married any more. He made sure of that during those three years of hell.  He recently has informed me that he doesn’t know what makes me happy and he doesn’t know how to meet my needs when it comes to our relationship.  That really hit me hard. After all these years, he still doesn’t know how to be a husband to me (he has admitted that he has sucked at being a husband and father), but there is a positive note to this.  He wants to learn and he is listening.  Progress has been at a snail’s pace, though, painfully slow, but for the first time he is putting in real effort. He is committed and is determined to make our relationship work.   

Then there is my employment situation. I have been a certified teacher for 18 years in grades Kindergarten – 12th grade.  The 2011-2012 school year literally almost killed me with stress.  Over the past four years I have slowly been transitioning myself away from working a daily teaching job.  I can no longer physically or mentally continue working every day and also care for my two children who cannot attend a regular school day at a school.  They are both homeschooled, but are also enrolled in our local Home Link program, and my daughter receives her education services at our local high school by attending only mornings Monday – Friday. 

I finished my Master’s degree last April. I now officially have the credentials to say I am both a professional in Autism Education and a Science Teacher, yet I am still under employed and I don’t see how that is going to change anytime soon.  As of now I have five invisible disabilities:  Autism, Generalized Anxiety Disorder, Ehlers-Danlos Syndrome, Complex-PTSD, and Dyscalculia.  I struggle everyday with chronic pain, Misophonia, anxiety mixed with depression, and I struggle to live in a world that is not designed for someone like me. I have been on ten different anti-depressants, five different anti-anxiety medications, and three different sleep aids.  I have tried a variety of pain medications as well.  I have paradoxical effects with all these types of medications. Nothing works for me and only makes things worse.

My medication is running. I have been a runner for 23 years and I fight every day to stay out of a wheel chair.  Due to the continued degradation of my connective tissues all over my body from Ehlers-Danlos Syndrome, it is only a matter of time before running may be taken from me. I have already had to give up weight lifting, backpacking, mowing, gardening in other than large pots, picking boxes up, moving furniture, the list keeps growing every time another injury occurs or another body system begins to fail. I carry on, though. I just brace up my joints, bind up my torso, and continue to persevere.  I have to, but it gets harder and harder when the feeling of hope just isn’t there. The chronic pain wears you down.

With all of this, I am still struggling in thinking about what brings me hope.

The first thing that comes to mind as I have been typing all this out are the two young people who kept me going before when I found myself horribly burned out, my two children. They are everything to me and I am determined to persevere above all odds for them, always.

I have been told by my own mother that she would never be able to do what I do. If it had been her raising my children instead of me, my daughter would have been sent away a long time ago. As for my son, his needs would also have been ignored just like mine had growing up, because he is so “high-functioning” in my mother’s eyes.  Neither my son nor I are “high-functioning”, but we are quiet enough to be easily ignored.

Both my children have Dysgraphia and both are autistic (my daughter as an accompanying expressive language impairment and my son does not).

My daughter was also diagnosed with Bipolar II (but it may instead be Schizo-affective Disorder – Bipolar Type) with debilitating anxiety. She takes six type of medication either once, twice, or three times a day depending on the type. We have alarms set to help her remember to take her medication. She has been hospitalized once for suicidal thoughts and hallucinations telling her to use knives to kill herself.  

My son was also diagnosed with Generalized Anxiety Disorder, Panic Disorder, Agoraphobia, and Social Anxiety as well as Misophonia. He also struggles with re-occurring depression. He takes two types of medication once or twice a day depending on the type. He has been on suicide watch twice.

Then there is the glimmer of hope that comes when I look in my husband’s eyes now and see the man I married in there. In his eyes I see an older, tired, and struggling version, but I see hope there, too.  He sees a future for us, a future that I thought we had lost that one October night when he decided to give up on me, our family, and the life we had. 

I have not reached the same point where he is, but I want to.  This place where we live now is where he grew up.  This is his world, but it is not mine.  This is why I am not at the same point where he is.  This world is so foreign to me.  The language is different, the mannerisms are different, the way of life is different, and I am cut off from my world due to our rotten living conditions.  No internet and all my belongings, my tools I use to self-regulate and make my environment safe and comfortable, are all locked up in storage.

My senses have been on overdrive since moving here. Everything is too loud and too bright. It hurts here.  Then there is the problem of my husband’s recent poor choices haunting us.  During those three years of hell he involved himself with four women in ways he shouldn’t have.  One of these women he purposely used to rip our family apart and my children and I caught him with her. Neither had feelings for each other, which just made it worse for me.  This woman ended up marrying my husband’s first wife and they both show up at my in-laws’ house on a regular basis. They are also both invited to family gatherings, gatherings we can’t go to because of their presence.  I am reminded of my recent trauma and loss all the time.  I can’t get away from it. This has taken a considerable toll on me.

“Though, when we begin to lose hope, things can seem bleak. When we run into constant resistance and are prevented from reaching our goals we can start to feel like there is nothing to live for. If we can’t get to where we want to be and don’t feel in control of our life, what’s the point?” – Joe Wilner (How We Lose Hope and How to Get it Back)

I have been finding myself asking, “What’s the point?”

What is the point? Why do I keep going when all there seems to be is endless struggle and pain?

The answer:

Because I must!

My life would be very different if I had been dealt a different set of cards. I know this, but there is no point in lamenting over that fact. I was dealt a certain set of cards and I have to live with what I was given and make the most of it. 

Over the years, I have written a lot about persevering and not giving up. I have to keep on fighting.  I have to keep moving forward.  I have to keep trying to reach that light at the end of the tunnel.  When I was at my darkest all those years ago, I kept telling myself that the tunnel will end and light will be reached again.  I knew it would happen, because that was the only option available.

I am there again telling myself that this dark, burned out tunnel that I have found myself in will eventually end. It has to.  I don’t know what I will find when I reach the light again.  My life may once again be transformed into something I wasn’t planning on, but at least I will be there to see that transformation. 

I will persevere. I will keep moving forward.  I will keep on keeping on.  That is the only option I have. 

 

Perhaps that is where my hope really lies, by keep on keeping on . . .

 

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”

― Martin Luther King Jr.

The Hell of a Meltdown – When Your Brain Becomes Flooded and Short Circuits

explosion

Image found at Regarding Autistic Meltdowns: What They Are, How to Handle Them, and Why Kids Having Meltdowns are NOT Naughty Brats

My Facebook post from yesterday:

So, meltdowns suck, are painful, are hugely embarrassing, and you cannot stop them . . .

Meltdowns don’t stop when you become an adult . . .

A meltdown has been ongoing all day . . . I am in hell . . .

My environment sucks . . .

Trying to block everything out with music. Life keeps intruding . . .

 According to Bec Oakley from Snagglebox, “Anybody Can Have A Meltdown”:

What are meltdowns?

Put simply, a meltdown is a state of neurological chaos where the brain and nervous system overheat and stop working properly. It’s called that because it’s the body’s equivalent to a meltdown in a nuclear power plant, in which the fuel in the reactor core becomes so hot that it melts and releases energy.

Sometimes it gets so hot that it causes an explosion, and the energy is released outside of the core. It’s this explosive reaction (crying, yelling, lashing out) that most people refer to when they talk about behavioural meltdowns, but that’s just the bit that you can see. There’s a whole lot more going on inside during a meltdown.

Bec Oakley goes on to describe what happens during a meltdown:

What happens during a meltdown?

When we find ourselves in a stressful situation from which we can’t easily escape, the brain becomes flooded with emotional, sensory or cognitive input which jams the circuits and kicks off the ‘fight or flight’ responses associated with panic. Executive functions like memory, planning, reasoning and decision making start to shut down, which makes it even more difficult to find a way out of the situation.

Eventually the neurological pressure builds to the point where it begins to trip internal circuits like language, or is released externally as an outburst of physical energy like yelling, hitting or running away. Although this explosive reaction often seems to come from nowhere, it’s just one part of the meltdown cycle.

Meltdowns are horrid things.  They hurt so much and you can’t stop them. They also don’t stop simply by becoming an adult.  I am 41 years old and I still have them.  At least now I know what they are and I can feel them building.  Five years ago I didn’t know what meltdowns were.  I also didn’t know what autistic burnout was.  Five years ago I was finally diagnosed and I finally had answers.  I wasn’t crazy, I wasn’t losing my mind, and I wasn’t broken. 

The first time I went into autistic burnout I had no idea what was happening to me. I had no words to describe it.  It was hell.  It felt like I had been sucked into a black hole.  I was being torn apart, yet no one could see it.  I was screaming for help, but no one heard me.  I had to claw my way out on my own.  It took years.  During that time I was diagnosed with PTSD. That was just over 12 years ago. That initial PTSD diagnoses has now been upgraded to Complex-PTSD.

I have fallen into autistic burnout many times since, but I knew what it was and I knew what to do. I have once again fallen into autistic burnout, but this time is different. I know longer have a healing environment to submerse myself in.  In fact, it is this environment that I currently exist in that has led to this newest bout of autistic burnout.  I have been having more and more meltdowns.  Yesterday was a particularly bad one.  As I type this I am still struggling to recover from it.  I am shaking as I type.  The crying that started yesterday morning hasn’t really stopped.  My brain wants to shut down, but I have to keep going.  I have responsibilities to take care of.  I don’t have the luxury of shutting down to allow my body and mind to heal. 

Yesterday evening I went through my old blogs looking for ones about meltdowns. I started blogging in September 2012. Pain and struggle seem to be re-occurring themes with me and it is getting really old.  Today I have been playing Avril Lavinge – Keep Holding On  over and over again. I am determined to make it through.  I will keep holding on.

Here are my past blogs about meltdowns:

The Dreaded Meltdown – Part 1 and The Dreaded Meltdown – Part 2 – February 10, 2013

Why Won’t They Listen? – January 27, 2014

Being Emotionally Exhausted – February 27, 2014

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

Side to Side – May 13, 2015

Here is some more useful information about meltdowns and autistic burnout:

The Tell Tale Signs of Burnout … Do You Have Them? – Psychology Today Article

Ask an Autistic #3 – What is Autistic Burnout? – Video

Meltdowns: triggers vs. root cause – Blog (Life, His Way – Thriving with Autism)