There Once Was a Girl

Full disclosure:  I have been in counseling for about the last six months to address my Complex-PTSD. More information about my struggle with Complex-PTSD can be found here —–> Moving from Surviving to Healing

My counseling has been focused on trauma therapy.  We began with building my skills up so that I would not be so overwhelmed during therapy.  I learned I had really strong adaptive skills for surviving, but not for actually living my life.  My counseling is a combination of Eye Movement Desensitization and Reprocessing (EMDR), Acceptance and Commitment Therapy (ACT), and Cognitive behavioral therapy (CBT).

I have been having a difficult time with dissociation during therapy. So much so, that my counselor went to a week long training to learn how she could better support me and others like me.  My counselor has learned that she has to tread very carefully when trying to help me process the various layers of trauma that I have experienced throughout my life.  Accessing one layer has caused a cascading affect that overwhelms my mind causing me to dissociate.  My mind is basically going into seize mode to defend itself. This can be very disorienting and not at all a fun experience.

With the help of my counselor, we have realized my trauma started at a young age and continued on into adulthood.  My counselor told me that we need to help the child heal who was traumatized.  She is still there, but we need to refer to her in third-person.  The idea is that a person will less likely fall into a pattern of blaming themselves for what happened to them as a child if we refer to that child in third-person. 

According to my counselor, the young girl that was hurt long ago is still in me hiding and kind of running the show in a way. She might be silent, but she is affecting my adult life.  She hid away to protect herself, but was never given the opportunity to heal.

During my last EMDR session, I was tasked to imagine the girl. Not judge her, or analyze her, or force her to do anything. Just be there.  I was then task to imagine her in a safe place.  The image that came to mind was her sitting in the grass, under a tree, while holding her cat. This is where the girl went to hide and she has stayed there all these years. The girl did not want to talk, but she found comfort with someone being there. 

Dissociation hit me as my counselor was talking me through our EMDR session. All the images whooshed away to grayness leaving me feeling dizzy and disoriented.  Fortunately, my counselor was able to get me grounded again.  As an alternative to what we had been working on, she suggested that I write a narrative in third-person about the girl. I was to focus on only one trauma that the girl had experienced. 

My traumas are all twisted up together in many layers, so focusing on only one trauma is difficult for me, but I decided to try to write a narrative anyway.  Below is the result of my first attempt of writing a narrative about myself as a child in third-person.  I could have continued writing more, but my goal was to try to stay concise. Keep in mind, I was not diagnosed autistic until I was 36 years old, yet all the signs were there.

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Tree CatThere once was a young girl who hid in her room. Her room was the only place that felt like hers.  She was allowed to decorate her room how she wanted.  No one yelled at her while she was in her room.  She was left alone. 

Life became harder when she left her room. She had to be careful how she talked.  Her father would tease and make fun of how she spoke. Her mother would ignore her or dismiss the girl unless she wanted something from the girl.  Yelling happened a lot.  Her father would yell at everyone in the house and her mother would chastise her for not being how her mother wanted her to be. The girl could not understand why this happened.

When the girl stayed in her room, she was left alone. She did not like being alone.  She would ask her parents how to make friends.  She was told to talk to people, but was never guided on how to do that.  People seemed uncomfortable when she would talk.  She was told she was quiet, shy, and stuck-up simply because she didn’t talk much.  The girl didn’t understand why people thought of her in these ways.  She had trouble pronouncing words. She found her mind went blank around people, there were no words, and she didn’t know how to ask for help.  

When she tried to ask for help, she was told to figure it out herself or that she was being silly. She was told again that all she needed to do was talk to people. How do you talk to people when there are no words?

She was told to be more like her little sister who had friends. The girl couldn’t understand how to be like her little sister.  How could she be like someone else?  What was wrong with her?

She was told to loosen up and not try to control everything. This only confused the girl more.  How was she controlling everything?  How does one “loosen up”? This didn’t make any sense to the girl.

There was so much confusion being around people. The girl always felt there was something wrong with her.  No one seemed to notice how much she struggled.  No one seemed to notice how lonely she was. No one seemed to notice how hard she tried.  Nothing seemed to ever be good enough to those who shared a life with the girl, and yet the expectations kept climbing.  The pressure to be someone other than herself grew and grew.

So, the girl would retreat to her room to be amongst her things and snuggle with her cat. She felt comfort amongst her belongings.  She was left alone when she was in her room.  She could listen to her music in peace while talking to her stuffed animals.  She would practice pronouncing words on her own in private where she would not feel embarrassed.

Unfortunately, this peace would not last. The girl’s mother began to chastise her about her toys. Her mother seemed so angry.  What was wrong with keeping the toys?  The toys were taken care of and didn’t leave the girl’s room.  The toys were special to her. The girl didn’t understand why her mother shamed her for having toys, toys that she had been encouraged to get not that long ago. Her sister wasn’t being shamed. Her sister was always allowed to keep her toys. The girl was protective of her belongings. She knew that her father would throw away anything that went into the garage.  Her father didn’t like having things in the house either.  He preferred bare walls, a television that only he controlled, and a chair that was only his.  

The house that the girl lived in didn’t feel like hers. The house was an uncomfortable place to be in. When being inside the house became too much, she would go outside in the yard or down the street into the woods. When outside, she would find a special tree to be near, to touch, and even hug. She liked the feeling of the bark. She liked the smell of trees.  She liked the intricate patterns in the trunks and leaves of the trees.  She liked to watch the insects, birds, and squirrels that lived in the trees. The girl liked being around trees. Trees didn’t yell at her. Trees didn’t chastise her.  The girl found that she could talk to the trees without having to speak.  Trees were safe. Trees understood and helped her feel better. Trees told her it was going to be okay.   

So, the girl wrapped herself up inside herself and went through the motions of the life she found herself in. She was expected to do what she was told and was taught to not make others upset.  If people were upset, she had to find ways to make them feel better, but no one seemed to take much notice when she retreated. 

Her mother would take it personally and ignore her. Her father would only interact with her on rare occasions.  She was expected to come out of her room when requested and not to question.  She was expected to be a good girl and do as she was told.  Rules were rules and she could not disappoint. To disappoint meant more yelling and more chastising.  The girl learned her needs did not matter, what she wanted did not matter.  She wasn’t allowed to show much emotion, because it made others in her life uncomfortable.  

The trees knew what she needed, though. The trees let her cry and let her scream.  She would run and dance amongst the trees, playing in the leaves and making dolls, bracelets, and crowns with the pine needles.  

Returning home meant more silence, more demands, and more loneliness. She wanted to hide when she was at home. Her cat was her only companion.  When at home, she felt something wasn’t right with her.  She felt tense and on guard all the time.  She wasn’t like how the others wanted her to be. 

She wanted wings so she could fly above everything and everyone. She wanted to soar above the trees, like Hawk Girl. She wanted the power to run incredibly fast, like Flash Gordon. She loved the feeling of the wind on her face as she rode her bike fast down hills.  The sensation made the girl feel like she was free.

And that was what she really wanted, to feel free. Feeling the wind on her face made sense to the girl. Feeling the texture of the bark on trees made sense to the girl.  Feeling the softness of a cat’s fur made sense to the girl.  Moving fast made sense to the girl.  Loosing herself in her music made sense to the girl.  Caring for her toys made sense to the girl.

What the other people in her life were saying to her and wanting her to do did not make sense. The expectations being placed on the girl did not make sense to her.  She felt so alone and suffocated in the house she lived in, but outside amongst the trees where she could run, bike, hike, dance, move, and be loud is where the girl got a glimmer of what feeling free was like.  To the girl, freedom meant having the space and permission to feel like herself.

Unfortunately, much of that was eventually taken away from her. As the years went past, the girl’s mother seemed to become even more controlling and her father even more distant.  The girl did not know that there had been a box being built around her to contain her.  The girl did not know that the other people in her life were uncomfortable with her spirit and felt that her spirit needed to be controlled.  She was still being expected to be someone else.    

The silence inside the girl grew as she wrapped herself even more into herself. She was in pain and wanted to find protection from the containment her life had become. The young girl stopped talking. She retreated deep within herself. She just wanted to be left in peace sitting under her tree with her cat staring at the blue sky, feeling the green grass under her feet and the warm breeze on her face, and listening to the birds flying overhead.

And this is where she has remained to this day.

Tree Clouds

(Images do not belong to me.)

 

Dating While Autistic and in My 40s

“The meeting of two personalities is like the contact of two chemical substances: if there is any reaction, both are transformed.”     – Carl Jung

Yes, autistic people have partners and have children. Autistic people can and do get married. Being autistic does not mean a person won’t have romantic connections with other people.  Some autistic people find it easy to be in romantic relationships and some might struggle.  Struggling in relationships is not solely restricted to autistic people. Lots of people with different neurologies have relationship struggles.  Being autistic and/or having autistic children DOES NOT increase the chances of divorce.  This is a misconception that just won’t die.  The myth is that the divorce rate in families with autism is 80%. This is not true!  The myth has been debunked!

Under a Looking Glass: What’s the truth about Autism and Marriage?

Researchers in Baltimore investigated the supposed 80 percent divorce rate for parents of a child with autism spectrum disorder (ASD). Unlike other studies, this one was particularly large – using data from almost 78,000 parents, 913 of whom had a child with autism – and included families from across the United States. The bigger the study, the less likely the results are due to chance or something unique about the pool of people studied. The researchers, from Kennedy Krieger Institute and Johns Hopkins University, found no evidence of an 80 percent divorce rate.

In fact, parents of children with autism split up as often as parents of children who don’t have autism, according to their research. In this study, about two-thirds of the children lived with their two biological or adoptive parents. That was true whether the children had autism or not. The severity of a child’s autism symptoms had no effect on the likelihood that parents would go their separate ways.

I am autistic, and, yes, I was once married. My divorce was not caused by my neurology nor was it caused by the neurology of my children.  I was in an abusive marriage, which I have written a lot about.  My ex has tried to blame my neurology as to why he did the things he did, but it really came down to him using projection and refusing to take responsibility for his actions.

Here is a list of a few of my previous posts about my abusive marriage:

Now that I got that out of the way, I want to address a different topic – dating. The last time I was dating anyone was when I was in my twenties.  Dating in the mid to late 90s was very different compared to today.  For one thing, there was no social media yet.  According to the Complete History of Social Media: Then And Now, the first recognizable social media site, Six Degrees, was created in 1997. It enabled users to upload a profile and make friends with other users. In 1999, the first blogging sites became popular.  I didn’t even know this until just now when I looked it up. This wasn’t a platform I had access to.  I didn’t have a cell phone until after my daughter was born, which would have been in early 2001.  Texting was still in its infancy at this point.  There was no YouTube, or SnapChat, or Facebook.  There was no Twitter, or Instagram, or Tumblr. Myspace wasn’t even around yet.  The World Wide Web became available in 1991, but to access it you had to dial into it through the phone line. There were no dating apps.  No one used the word “apps”.  Meeting and staying connected to people was very different when I was in my 20s.  A person had to either be “fixed up” with someone by a third party or you had to meet a person somewhere and talk to them face-to-face and decide if you want to see this person again.  I know, weird, right?

Here we are in the year 2019 and I am now in my 40s. I am a single mom to two older teenagers.  I hadn’t had much dating experience prior to being married and for much of my adult life I had been in a toxic, abusive situation that resulted in me developing Complex-PTSD as well as both my children developing symptoms of PTSD.  My ex left seven years ago and the divorce officially happened five years ago.  Seven years is a long time. On average, a person in an abusive relationship will attempt to leave 7 times before finally leaving for good.  I was no different.  I was trauma bonded to my ex and a trauma bond is very difficult to break. My ex came back after the first three years.   It didn’t last, because after a while he fell back into his abusive behavior patterns.  I hadn’t dated anyone that whole seven years, that is, until now.

Let me tell you, dating in your 40s with children is weird! Dating as an autistic woman with Complex-PTSD makes it so much more difficult and scary. It is a whole different landscape these days, and, luckily, my counselor has been helping navigate.  My children have been providing a lot of encouragement as well.  Yes, my two autistic teenagers who have never dated anyone are helping their mother figure out how to date in this modern age.

When I first entered the dating realm in my 20s, I didn’t know I was autistic. I didn’t know that I was developmentally delayed.  I didn’t understand my sensory needs.  I hadn’t been exposed to what a healthy relationship was like.  I knew I didn’t want to get married until after I finished college, but I did date.  Having children was also very important to me.  My biological clock went off long before I was ready to get married.  What ended up happening was that I married what I knew.  The skills I had acquired growing up prepared me to live in a toxic marriage. 

I knew how to navigate a situation like that. I knew how to survive.  My adaptive skills that I had acquired growing up as an undiagnosed autistic child served me well.  It got me to where I am today.  Those skills kept me alive, but I didn’t know how to live.  I am very good at surviving, but I found myself at a loss when it came to actually living my life without being in a constant state of fight/flight/freeze/fawn. 

I needed to unlearn my old adaptive skills first before I could relearn new healthier adaptive skills that would allow me to successfully be in a healthy relationship. This process of unlearning and relearning takes time and it is not necessarily a smooth transition, especially since it requires a person to process layers of trauma that caused the old adaptive skills to develop in the first place.  This process left me in a sort of grey zone of not knowing what to do or expect when I finally did meet a man I wanted to date.

This void, if you will, is very anxiety provoking. As an autistic person, I need routine and predictability.  Even if it was toxic, I knew how to navigate in my old life.  That old life was “home” to me, but I didn’t want that “home” anymore.  I wanted to know what it was like to be in a healthy relationship.  That required change and change is scary, particularly for an autistic person.  I couldn’t make the change happened without help.  The hurdle was too large for me to get over without assistance.  That is why I went back into counseling after 12 years when I was first diagnosed with PTSD.

During the time I have been in trauma therapy and unlearning and relearning adaptive skills, I joined a dating app. My counselor encouraged me and I felt it was time.  This dating app matched me with a gentleman that I probably would never have met on my own.  Different towns, different school districts, but we have so much in common.  We started chatting through the app.  Then we decided to meet. That was over two months ago and our relationship has steadily progressed in a positive direction since.  I am in my 40s and I officially have a boyfriend.  For the first time in my dating life I feel genuinely loved for the person I am, my true autistic self.  I feel accepted and seen as a person, not just seen as some extension of another person to be used as they saw fit.  It is an amazing feeling, but I still struggle with trust.  This struggle comes from being a domestic abuse survivor.  I am working on learning how to trust again, taking things slow, and enjoying every moment of it.

I don’t know what the future holds for me. I don’t know what this new experience will New Beginningslead to, but I am grateful for this new man in my life. Not only is his showing me what being in a healthy relationship is like, he is also showing my children that there are good men out there, good fathers out there who do actually emotionally support their children and provide for them without being asked to. 

My children’s negative memories about their father will never go away, but my hope is that this new experience can help build more positive memories for them. My children like this new man in my life. They like how he treats me. They have both told me that they don’t feel like they are walking around on eggs shells with this new man like they feel around their father.  There haven’t been any red flags or warning signs that this new guy is a danger either.

My children haven’t seen their father in over a year and a half. They don’t speak to him. At this point, their father still represents a danger.  He caused so much damage, but tries to pretend like everything is fine and everything is “normal”.  This situation is not fine nor is it “normal” in anyway.  This is one of the big reasons why it took me so long to get back into the dating scene.  I didn’t feel safe.  I didn’t know how to trust again.  This new man in my life has been showing me, little by little, that I can trust again.  It is a rarity for me to be able to relax around other people.  I find myself relaxing with him.  I feel better within myself and I like who I am when I am with him.  He makes me feel pretty without doing anything.  I had to learn that this is what it feels like to be respected by a romantic partner. 

He doesn’t push me into things. He is patient and understanding. He shows compassion and is empathetic. He is considerate of my needs and wants to learn about my neurology. He has even asked about words he should and should not use.  This is incredible to me.  I have not experienced this type of situation before.  He sees who I am and wants to learn more so that he can be more supportive!

I feel like a teenager again learning how to do all this romantic stuff all over again. It is confusing at times and other times it feels natural.  I am a 44 year old autistic woman learning how to date again in the modern age.  It is fun and thrilling and scary and tiring all at once.  Thanks to the development of social media and dating apps, I have been able to experience romantic love at a level that I never have before, a healthy, respected love.  Autistic people love, they have relationships, they have romantic partners, and they do get married and have children.  This process might look different from the societal norms of today. It might be slower, there might be more confusion, more heartache, but that doesn’t mean it won’t happen.  

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

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.)

 

The Love of a Mother and the Pain of Transition

My daughter turned 18 years old last month. My son will be 16 years old at the end of this month.  It is a weird feeling for me.  Lately, I find myself wanting to cry more often. To be honest, I am crying right now.  I am also so proud of them.  My babies . . . .

“Transition” is the term used in the education system for when a student is moving out of high school and into the adult world. In Native American culture, the term “transition” refers to death.  As a parent who has been assisting both my children in the transition process for the past several years, I will say there is a sense of death, but not in the traditional sense.  Transition, as defined in the education system, is a period of great change.  There are aspects of the life that you have had that are coming to an end, but there are also other aspects that are being birthed into existence. 

My children have been blossoming into two amazing young adults. It is a painful and wondrous journey from a parent’s perspective, but also from the perspective of the developing child. The world can be a terrifying place, especially if you live in a world that is not designed for you. 

To be given the privilege of caring for a young life, to support that life, to encourage and protect that life’s growth and development is something I will cherish for eternity. This privilege is also an incredibly difficult one to bear. 

The process of transition into adulthood isn’t just a journey that a developing child goes through. The parents also have to go through a transition as well.  My job description as a mother has shifted over the years as my children have been maturing.  These last two years in high school have seen a major shift in my job description as a mother.

I have had to make myself step away from my babies. My job as their mother has been to give both of them roots, to assure them that they were protected and cared for, and to teach them how to fly on their own. It has come to the point where I need to let them spread their wings.  It is a terrifying endeavor for a mother, particularly for a mother who has raised her children on her own for the last six years. 

I am scared . . .

My children have multiple disabilities. Autism is only one. Mental illness affects their lives at so many levels.  Then there is the trauma and grief of having a father who ran from them. 

My baby girl is graduating high school in June.  She is already a registered voter.  She doesn’t have her driver’s license, but she plans on eventually getting one. She has been researching universities and scholarship information for some time now.  She has dreams of working in the field of environmental science.  I remember when she first looked straight into my eyes.  She was just born and my doctor had placed her on top on my chest while the umbilical cord was cut.  She was so beautiful, blue eyes and a full head of hair.  She didn’t cry until she was given a bath. She would just stare right into you with those intense blue eyes.  She did it to the pediatrician at the hospital as well.  He commented that he had never seen a more intense baby.

My son, my beautiful son, is determined to eventually earn a PhD in Astrophysics. I almost lost him due to pregnancy complications. I was 21 weeks along when everything went to hell.  My body fought so hard and gave everything it had to keep the pregnancy going.  I was almost paralyzed.  He eventually was born healthy at 37 weeks.  I had bones break during his delivery. He came out screaming. He was alive and breathing. That was all that mattered.  My son was alive!  

When I think of transition, I envision the process of Mitosis. At first there is a single cell, the parent cell.  There comes a point in the life cycle of that cell where the chromosomes are replicated, the information and tools needed to live independently is prepared to be passed on to the next generation. Those replicated chromosomes then align in the center of the cell with centrioles moving towards the poles of the cell.  This is the part where the parent cell is getting ready to separate the replicated chromosomes, all that information and tools, in preparation for transition.  Then the painful pulling apart begins.

The parent cell needs to allow the next generation to move ever so slowly away from the protection that the parent cell can provide.  In this analogy, my children and I are at different points in Anaphase.  My daughter and I are closer to Telophase than my son and I are.  At some point all three of us will reach Cytokinesis. This is where my children will fly on their own.  

Mitosis

There are times I am finding it hard to breathe when I think about what is coming. I know that they must be allowed to fly on their own.  They need to have agency of their own lives.  For the last six years it has been about survival, processing trauma and grief, and finding out that we are all stronger and have more resilience than it ever occurred to us. 

I will admit that I am scared about being alone. My children are so much a part of me that I need to redefine who I am after they move on with their lives.  Not only have I been a single mother, I have also been their primary teacher, their confidant, their protector, the one family member that they could count on.  I need to learn how to branch out.  I plan on going back to graduate school and earn a second Master’s degree.  I feel that I need to do this. I need to find a new path that will allow me to live a life that is not centered on the wellbeing of my children.  I need to allow myself to spread my wings as well, but at the same time maintaining a support structure so my children will always feel that someone has their back. 

I have had to struggle on my own for so long. I don’t want that for my children.  I don’t want them to feel alone in the world with no one to turn to.  I will be there for them for as long as I can and I will continue to teach them the tools needed to make it through their days on this confusing planet.  That is a part of my job as a parent that will never change.

I raise my glass to all you parents out there struggling through your own transition and to those who will be facing it in the future. The journey is hard, but it is well worth it.

“Change is situational. Transition, on the other hand, is psychological. It is not those events but rather the inner reorientation or self-redefinition that you have to go through in order to incorporate any of those changes into your life. Without a transition, a change is just a rearrangement of the furniture. Unless transition happens, the change won’t work.”

– William Bridges

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

(Trigger Warning – Mention of suicide and abuse.)

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

What is toxic shame?

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

brene brown

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

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

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

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

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

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

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

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

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

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

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

How does toxic shame become generational?

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

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

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

According to Luna Lindsey:

Shame sends two of these three messages: 

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

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

Luna continues on and suggests some possible solutions:

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

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

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

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

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

May all beings

Heal and awaken

Into the love and awareness

That holds and honors

The fullness of being.

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

 

References:

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

The Problem with Isms – Wreaking Havoc Across the Planet

I am sitting here at my computer thinking about isms.  There are so many isms in the world and these isms can wreak havoc upon the people of this planet.  According to The Phrontistery, there are around 234 different isms, each representing a philosophical, political or moral doctrine or a belief system. 

Our current society is obsessed with compartmentalizing things into definitive categories or labels. Everything has to be put in a box.  If you don’t fit into a predetermined box, society will try to shove you in one whether you like it or not.  Society wants things to fit in these nice little predetermined boxes.  This is where the isms come into play. Isms are behaviors and some behaviors can be problematic. Isms can be used to exclude some voices, and, at the same time, raise other voices up.

When an ism is a belief system, then that ism generally becomes a part of your identity. According to Scott H. Young, “humans are funny creatures when it comes to our identities. Having a belief has little baggage. You will defend the belief when it is reasonable, and abandon it given enough contrary evidence. Being a belief, or “-ist”, is different. The belief becomes something to defend zealously, the way you would defend a part of your body under attack.”

Mr. Young continues by saying,

Your level of certainty in a belief isn’t related to whether it is a part of your identity or not. I have far greater conviction in the force of gravity than atheism or vegetarianism, yet I don’t call myself a gravitist.

The difference, to me, appears to be a more social one. People decide they are an “-ist” as a way of distinguishing themselves from others. Gravitism doesn’t exist because there aren’t agravitists, who deny the existence of gravity.

“Isms” develop as a way to separate people into distinct tribes. The downside is that tribal logic isn’t rational. Instead of trying to decide which belief system is true or most pragmatic, people defend their tribe at all costs.

The damage of “isms” is obvious in politics. Instead of rationally trying to decide on the best way to govern, most effort is spent on partisan battles.

Racism, for example, is a very, very problematic behavior.  This type of behavior needs to be taught.  We are not born being racists.  We are also not born being patriots, feminists, sexists, nationalists, or nihilists. A person has to be taught to be part of or against a particular ism.  

“The difference between patriotism and nationalism is that the patriot is proud of his country for what it does, and the nationalist is proud of his country no matter what it does; the first attitude creates a feeling of responsibility, but the second a feeling of blind arrogance that leads to war.” – Sydney J. Harris

I have learned that misogynists tend to be against feminists and vice versa. Patriotism and nationalism are not the same things.  Racism is so deeply imbedded into our society that people don’t even acknowledge that racism is there.  It is just day-to-day business.  Sexism is also deeply imbedded in our society.  Remember, sexism is defined as “prejudice or discrimination based on sex or gender, especially against women and girls”.

The damage of isms is obvious to those in the disability community in the form of ableism.  People with disabilities are considered the world’s largest minority group. Currently around 10% of the world’s population, or roughly 650 million people, live with a disability.  I have written about ableism before – Ableism in Society – Autism and Mental Illness.

Ableism is another ism that is profoundly imbedded into our society, so much so that people don’t even realize that they are being ableists. Ableism is a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities.  Ableism is also the belief that people with disabilities “need to be fixed or cannot function as full members of society” and that having a disability is “a defect rather than a dimension of difference.”  

 Ableism is intertwined in our culture. Ableism evolves within a person and spreads within a society due to beliefs of what having a disability means or does not mean, how able-bodied people learn to treat people with disabilities, and how people with disabilities are often not included at the table for discussions and decision making about their own lives.  I will state again, isms can be used to exclude some voices, and, at the same time, raise other voices up. Ableism silences the voices of people with disabilities in favor of able-bodies voices.

Ableism is considered the root cause of the marginalization and discrimination disabled people are subjected to. People with disabilities need to understand their value. It is important that people with disabilities feel valued and wanted. In order to do so, it is necessary for us, as a society, to check our ableist tendencies, internal and external. Racism kills. So does ableism. It kills dreams.  It kills opportunities.  It can also kill a person.  For more on this, go to Ableism Kills.

More Information about Ableism

Ableism: How to End the Prejudice that No One Talks About

Anti-Oppression: Anti-Ableism

Ableism/Language

Stop Ableism