Tag Archives: healing

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

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.

Fractured, but Intertwined

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

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

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

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

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

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

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

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

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

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

Moving from Surviving to Healing

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

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

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

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

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

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

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

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

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

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

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

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

But I did . . .

I fought back . . .

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

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

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

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

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

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

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

Abuse and Its Many Forms Posted on October 29, 2018

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

Here are some additional resources:

The Domestic Abuse Hotline

Domestic Violence and Abuse

How to Recognize the Signs of Mental and Emotional Abuse

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

Ramblings of an Autistic Single Mom

NOTE: The Aspie Teacher blog is the story of my family’s journey. My first blog was Geeky Science Mom’s Tumblr which I started in September 2012 and my writings gradually progressed from there. Periodically I look back over my old writings to check on the distance I have travelled in this journey that is called my life. This is one of those checks.

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I am autistic and I am also a mother of two amazing young people who are autistic as well. I am also single.  My children see their father maybe two hours every week, sometimes it is less.  He is not really involved in their lives.  For the past four years I have been working multiple jobs to make ends meet.  Somewhere in there I managed to earn my Master’s degree. I have been homeschooling/unschooling both my kids for the past three years and will continue to do so until both my kids graduate high school in another 2-3 years.  It has been a challenging balancing act.

I see articles online about single parenting with autistic children. It strikes me odd how bleak the authors describe their lives. One author claims that single parents of autistic children “can’t have it all”, that they “will never be compensated financially or professionally for the thousands of hours I’ve spent over the last decade taking my son to treatments”. Other authors complain about having to give up their career, complain they can’t go on trips, complain that it was the Autism that caused the divorce, and complain about the “grueling therapy sessions” (if they are grueling for you, how do you think your child feels?)

Parenting is hard no matter what the neurology of the child is. The reality is if you are a single parent, something has to give.  You can’t expect to have everything and the reason why you “can’t have it all” has nothing to do with your child’s neurology. It really does take a village to raise a child, so when part of that village is missing, it gets that much harder.

I willingly chose to put my career on hold when I became a parent. I was fortunate enough to be able to be a stay-at-home mom for five years. At the time, my husband had a good paying full-time job with benefits.  Being a single income family lead to finances being really tight, and we lived in a small duplex, but it was worth it.  The only time I was a home owner was when both my ex and I were working so we could afford a mortgage. As a single parent, I am a renter once again. This time, my rental is even smaller than the one we lived in back when my children were babies. Housing costs are higher and there is a housing shortage where we live.

My children have weekly counseling visits and my daughter has weekly occupational therapy (OT) sessions (something she personally asked for). We live in a rural area. Services are in another county all together. We are on the road a lot and I am fortunate enough to have the type of employment that allows me to take my children to their appointments.  I have never put my children through “grueling therapy sessions” and I never will.  Applied Behavior Analysis (AB A) sessions, which is considered the go-to treatment for Autism, are anywhere from 25 to 40 hours per week for 12 months a year for at least 2 years with sessions typically provided in 2-3 hours blocks.  I spent three hours observing an ABA session in June 2015 as a requirement for my Master’s degree program. It was horrible – Initial Reaction to ABA Observation.

My divorce finalized on June 23, 2014, but we had separated in October 2012. We tried to get back together after being apart for three years. Our attempt lasted a year and a half. My ex just doesn’t want the responsibility of a family.  It has almost been five years since we first separated and I have not tried dating. I have had to let myself grieve.  Looking through my old writings, I see many blogs that focused on sadness and grief.  I have had to allow myself to process those emotions. I have also had to be present for my children.  They have been grieving, too.  There was no room for romance in that.  I have to allow my heart to heal before I can allow anyone else in.  I am still healing.  Everyone grieves differently and the time it takes to adequately heal is different for everyone. When you have been in an abusive situation, it can take even longer to heal and you need to give yourself that time or you could very well fall into a similar situation.

Some of my previous writings describing my journey through grief:

Grief 2

[Image description: Sea green colored background with black lettering. “Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do it lean to swim.” – Vicky Harrison]

Then there is my issue of living in a duality of perception. I wrote that blog in June 2016 and it helped me realize some things about myself.  When I found myself unexpectedly a single parent, I didn’t know how I was going to manage.  My family isn’t in the area.  I was in graduate school at the time and I was working part time.  How the hell was I going to support two kids with special needs on my own!!!???!!! This thought was screaming in my head.  I was so filled with fear and shock I had no time to be angry, at least not yet.  My anger came later.  The grief cycle is an interesting, complicated thing. As I tell my kids, a very wibbly wobbly, timey wimey sort of thing.

I never thought I would get to the point where I would even consider letting my ex back in my life, but I did and I learned a lot from that experience. I learned about letting go, something I had been really struggling with for years.  As a content teacher, I didn’t think I could teach outside of Science (my area), but I found out I could.  I didn’t know I could teach myself how to do basic home and car repair along with all the other family/parenting/home stuff I had been doing for years, but I found out I could. I didn’t know I could parent on my own, but I found out I could.

I learned I was autistic five and a half years ago. Both my children had been diagnosed by that time. I have learned so much since then.  My life has been turned upside down and inside out, but I kept moving forward knowing that another sunrise would signal another chance for me to try again.  I kept learning and adapting.

It wasn’t the Autism that caused my divorce. In fact, divorce rates are similar for parents with and without autistic children, so don’t believe the myth that divorce rate in families with autism is 80%. It is definitely not (80 Percent Autism Divorce Rate Debunked in First-Of-Its Kind Scientific Study).

Looking back to where I was when I first became a single parent, I couldn’t really think of the future. I was in full on survival mode back then.  Looking where I am now, all I can say is “wow”.  I have come so far from that place where I found myself crushed, lost, and desperate just trying to make it day by day.

My journey is not complete, not in a long shot, but I find myself no longer in that place of desperation. I have found a future where I am valued and wanted.  I have found a future where I have developed skills I didn’t even know I had.  I have found a future where my children are seeing a future for themselves as well. I have found that my mind has a sense of ease now.  I still have a lot of stress in my life, but nothing like it once was.  I feel a sense of peace inside me now.  Do I still cry when I am alone?  Yes, my grief will take time to process. Where there was once soul crushing pain, there is now a sense of understanding and a level of acceptance of the reality of the situation. As I stated before, I had to adapt. I had to find peace on my own, and I did.

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.”

― Douglas Adams, The Long Dark Tea-Time of the Soul

 

**Image is not mine. Source is linked with image.

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.

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)

 

Rescuing Myself from Unrelenting Frustration

Frustration. I am not talking about the type of frustration that you experience while sitting in a car and the person in the car next to you is blasting the bass that pounds your ears, it is too hot, and the red light just won’t change to green. You can escape from that type of frustration.

I am talking about the type of frustration that is ongoing and seemingly unrelenting. The type of frustration that you can’t escape from, the type that makes you feel stuck and helpless in an intolerable situation that you can’t do anything about.  I have been experiencing this type of frustration for far too long.  

Here is a video by Charlie McDonnell about him coming out about having anxiety and depression – Anxiety, Depression, and Being a Downer.

I can’t escape it, I can’t make it better, and it is not going to get any better any time soon. I am past the point of “dealing with it”.  I am to the point of just trying to survive it.  I must endure for mine and my family’s sake.  They are stuck in the same frustration that I am, but how we each are experiencing it is unique to each individual.

How do I explain this? Where do I start?

First of all, we are in the process of building a house. Due to weather and financial setbacks we got behind on our building time line.  Our lease ended before our house was even close to being able to be lived in.  As of tonight, we are on our 26th night living in tents on our building site which is on half of my in-laws’ 160 acres of cleared pasture, but mostly heavily treed land.  Three nights ago I was done with tent living.

It is not just the fact that we are living in tents that has gotten me to this place. It is the constant buzzing of insects (lots and lots of yellow jackets), the heat during the day and the cold at night, the dust, the lack of proper bathroom and kitchen facilities, lack of privacy, the lack of sleep, lack of proper nutrition, and lack of money.

As I type this I am struck by my privilege. Here I am typing this on my laptop while sitting in my tent with a bottle of clean water next to me.  I am used to having a proper toilet, running water, and a cold refrigerator.  I am used to having four solid walls and windows and doors that lock.  I am use to having access to the internet on a regular basis.  I am use to being in an environment where I can control for the most part how light or dark or cold or hot I want it to be. 

I am not used to living in tents. I am used to tents being something you use to go camping in when on vacation, not to live in for a prolonged period of time.  I am coming from a place of privilege and I am whining about how frustrating my current situation is.  Yes, it could be worse.  We could be living out on the street.  We are not eating well, but we are not starving. It could be winter instead of summer. 

Again, yes, it could be worse. The key here is that I am not accustomed to this type of prolonged living.  There is no safe place for me. My body and mind cannot recover from the stress in the way that I need them to and am using so many more “spoons” living in this environment then I would be in the environment that I am accustomed to, the one that is safe for me.  I have lived in various states of burnout for years.  I know what I need to do in order to replenish my “spoons” so I can function well.  I am using way too many “spoons” right now and I am not able to adequately replenish them.  I knew it was going to be hard, but it still frustrates me that I am not able to tolerate living in tents to the level that I had hoped I would.    

An addition to our stressful living situation is the constant driving that I am doing (my daughter is an outpatient at a facility that is two hours away from where we live now). I am on the road four to eight hours a day depending if I come home or not during the eight and a half hours that my daughter is away.  That is A LOT of money being used to pay for gas.  I had fuel vouchers, but they were revoked for reasons we still don’t quite understand.  What we got out of it was that psychiatric health care is not seen as important as physical health care.  It is a long story that I won’t go into here, but just more frustration to add to the mix.

There is also the stress with our pets (one dog, three cats, and two parakeets) and the problems we have had with feral cats trying to get to our house cats that stay in my tent all day. My tent has been slashed open in many places. I sewed it up as best as I could, but the tent is pretty much trashed.  

Then there is the big problem of dealing with my husband’s past transgressions and all the choices he made during a three year period of hell when he was self-destructing. For more Information regarding this read Reaching for More, but also Striving for Balance.

My family is still in the process of healing from that and we got hit big time these past few weeks with triggers and the stress of unprocessed pain. We can’t seem to get away from the triggers (i.e. certain individuals that will remain nameless).  It has been a particularly difficult time for all of us, but since the pain has been brought forth front and center, it shows what we still need to address.  So many unanswered questions, so much confusion, so much hurt.

This all came ahead four nights ago. We had made it 22 nights, then I had a meltdown and my son had an anxiety attack at the same time.  That was Sunday night.  Tuesday morning my daughter had one of the worst meltdowns she has had in a very long time.  Later that day my husband admitted that he was overloaded.  He wants out of the tents as well.

Unfortunately, our house still is not livable quite yet. Today is Wednesday and the good news is that the metal roofing is going up on Friday and hopefully will be completed by Monday.  We don’t have the money for doors or windows yet, but we have talked about screening up everything and moving some stuff into the house so we and the pets can get out of the tents.  With the metal roofing up, we can then start putting in the wiring, then the insulation, then finally the drywall.    

We are building this house on our own with the help of friends and family and out of our own pockets. The going is slow and the frustration is high. Why are we doing all of this?  Why are we putting ourselves through all of this?

These are the questions I have found myself asking. The answer is we needed a fresh start. A chance to give ourselves a real opportunity to heal and live in a place where it is quiet, where we don’t have to worry about landlords and making rent every month, and struggling to pay bills with our limited income. It is a place where we will have a real chance to finally be able to live instead of just trying to survive each day.  With everything with the house, my family has had to really put in the effort to learn how to effectively communicate with each other.  We are learning to be a family again through the process of building our house. 

As frustrated and helpless that I have been feeling lately with everything, I have to remember that we are all together working on this project and we will see this through. There is no turning back now, no running away from problems. We have to face these problems head on, hand-in-hand, supporting each other through it all.  

Surviving means to “continue to live or exist, especially in spite of danger or hardship”. We have survived this long and I plan to continue enduring our frustrating situation until such time as it begins to improve.  My family has been through so much in a relatively short time, one thing after another after another after another.  We have survived this far and we will continue to persevere.  I am waiting for the day when I can start to live my life, to feel that I am actually thriving, and not feel so burned out all the time.

To me, as an autistic person, to feel comfortable would be a dream come true. There has only been a few times in my life where I could say I felt comfortable and there times were short lived.

Ah, to feel comfortable . . .

My kids have that wish, too. To feel comfortable in an environment that is not constantly bombarding you with sensory input. To feel comfortable in an environment where your anxiety is not always so high, draining you of energy, and keeping you so tense that you actually start to shake under the stress.  To feel comfortable means having the ability to finally being able to relax.

I am waiting for that day, the day when I can finally relax both my mind and my body in a safe place that is my own amongst my own things with my beloved husband, children, and pets.  

As I have been writing this, I was listening to an album called “The Sound of Rescue” I found it to be very calming music.  I also thought the title was appropriate for how I feel.  Rescue from this frustrating situation is coming and I will part of making that rescue happen.  In this particular case, the only people that will be rescuing us are ourselves.

Rescue yourself