Tag Archives: Stress

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.)

 

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

To Those Who Still Don’t Understand

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I really don’t know. 

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

ARC – Autistic Renewal Cycle

ABC – Autistic Burnout Cycle

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

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

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

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

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

According to Rick Hanson Ph.D.:

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

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

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

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

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

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

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

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

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

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

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

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

I Hate Complex-PTSD

(Trigger Warning – Discussion about Trauma)

I hate Complex-PTSD. There is no way around it, I hate it.  I got triggered today.  All it took was for me to be sent spiraling was for me to notice that a relative of mine had changed their profile picture on Facebook.  It was a completely innocent thing for them to do.  There was nothing wrong with the picture that my relative chose, but for me, it was enough to trigger a cascading effect of interacting layers of trauma that I have accumulated over the years.

Complex Post Traumatic Stress Disorder (C-PTSD) is a condition that results from chronic or long-term exposure to emotional trauma over which a victim has little or no control and from which there is little or no hope of escape.”

C-PSTD can occur in such cases of:

  • domestic emotional, physical or sexual abuse
  • childhood emotional, physical or sexual abuse
  • entrapment or kidnapping.
  • slavery or enforced labor.
  • long term imprisonment and torture
  • repeated violations of personal boundaries.
  • long-term objectification.
  • exposure to gaslighting & false accusations
  • long-term exposure to inconsistent, push-pull, splitting or alternating raging & hoovering behaviors.
  • long-term taking care of mentally ill or chronically sick family members.
  • long term exposure to crisis conditions.

How did I get to this point? I grew up in an emotionally neglectful and abusive household.  I married what I knew and the covert emotional manipulation and emotional abuse only got worse.  I have also been taking care of mentally ill family members for over 16 years now.  Then there is the medical trauma I endured 15 years ago that resulted in my initial diagnosis of PTSD which eventually grew to C-PTSD when more and more layers of trauma were exposed.

Post-Traumatic Stress Disorder (PTSD) and C-PTSD are similar, but they do differ in causes and symptoms. C-PTSD results more from chronic repetitive stress from which there is little to no chance of escape. PTSD can result from single events or short term exposure to extreme stress or trauma.

***Remember, C-PTSD is a stress disorder, not a weakness or defect of character nor is it a personality disorder although it is often misdiagnosed as Borderline Personality Disorder.

From The Center for Treatment of Anxiety and Mood Disorders:

CPTSD Symptoms

People who have gone through a long-standing, extremely traumatic situation may exhibit both physical and emotional symptoms related to their ordeal.

Emotional symptoms may include:

  • Rage displayed through violence, destruction of property, or theft
  • Depression, denial, fear of abandonment, thoughts of suicide, anger issues
  • Low self-esteem, panic attacks, self-loathing
  • Perfectionism, blaming others instead of dealing with a situation, selective memory
  • Loss of faith in humanity, distrust, isolation, inability to form close personal relationships
  • Shame, guilt, focusing on wanting revenge
  • Flashbacks, memory repression, dissociation

Victims of C-PTSD may also have physical symptoms, such as:

  • Eating disorders, substance abuse, alcoholism, promiscuity
  • Chronic pain
  • Cardiovascular problems
  • Gastrointestinal problems.
  • Migraines

From Out of the Storm:

Symptoms Shared by CPTSD and PTSD

According to Cloitre et al (2016), CPTSD shares three main symptoms with PTSD which include:

  • Re-experiencing the past – in the form of nightmares and flashbacks.  While in PTSD flashbacks tend to be visual, in CPTSD they are often emotional.  That is,  a sudden, overwhelming rush of emotions such as anger, shame, humiliation, abandonment, and of being small and powerless much like a child would feel when abused.  These are referred to as Emotional Flashbacks (EFs). and can last for minutes, hours or even days (Walker, 2013) . 
  • Sense of threat – constantly on guard or hypervigilant, strong startle reaction
  • Avoidance – of thoughts, feelings, people, places, activities relating to the trauma (e.g., dissociation, derealization)

Symptoms of CPTSD Only

Cloitre et al (2014) suggest that CPTSD differs from PTSD in that it has three additional symptoms:

  • Emotion regulation – Emotional sensitivity; reduced ability to respond to situations in an emotionally appropriate and flexible manner  
  • Negative self-concept – Feeling of worthlessness and defectiveness. Walker suggests that those with CPTSD suffer from toxic shame and have a virulent Inner and Outer Critic.
  • Interpersonal problems – Difficulty feeling close to another person; feeling disconnected, distant or cut off from other people (depersonalization, social anxiety). 

Everyone is unique and the above list of symptoms is not complete and not everyone with C-PTSD will exhibit all the symptoms listed. I, for one, do not have the physical symptoms of “Eating disorders, substance abuse, alcoholism, promiscuity”. There was a time I wanted revenge, but I couldn’t stand that feeling and fought hard against it. Revenge never solves anything and can ultimately destroy the person seeking revenge. I have wanted to die, but I have never had suicidal thoughts.  I also have never been violent, destroyed property, nor committed theft. I do not have cardiovascular problems, but I do experience chest pain during anxiety and panic attacks. I have had to establish healthy boundaries and am no longer in contact with certain family members beyond an occasional email.  I also never lost my ability to form close personal relationships with others.

What makes experiencing all this worse for me is that things that trigger me are typically seen as happy moments by most people, so there is little to no understanding as to why I cut myself off from exposure to reminders and why an unexpected exposure to a photograph of my happy sister, her happy husband, and her new baby affected me so badly.  I didn’t experience anger seeing that photo.  I was terrified!  Pregnancy and children birth reminders are horrible, panic inducing triggers for me. The reason for this is my medical trauma resulted from me being pregnant and giving birth.  I am not going to go into detail, but more information can be found here and here.

I got triggered this morning by a reminder of that horrific time in my life that was my medical trauma, the lack of emotional support I experienced from my family and continue to experience, and all the loss I experienced and continue to experience.  That one trigger not only triggered me regarding my medical trauma, but every  emotional trauma after it. There is a lot.  As I stated before, I was in an emotionally abusive marriage and came from an emotionally manipulative and neglectful home life that followed me into adulthood.    

It is 11:31PM now. I am still struggling. I have been crying off and on all day, but most of my crying was this morning.  How have I coped?  I used music and running.  I let myself ride the melody and lyrics of specifically chosen songs and played them over and over again.  I let the music flow through me and let the emotion flow with it.  I had to.  No more pretending.  I am safe now.  I don’t have to hide my anguish anymore. I have to let my pain out, but I have to do it in a health way.  I have been a runner for 24 years.  Running helps me regulate my anxiety and helps me control my meltdowns.  Running is not for everyone, but it is a way for me to help ground myself when the whole world feels like it is collapsing all around me like it did today.

My theme song today was “Total Eclipse of the Heart” by Bonnie Tyler.  I felt this song fit with how I was feeling and how I wanted to express myself, because I had no words, just tears and pain.  (Lyrics) 

After my run tonight I found myself still feeling lost. The song I needed to listen to was “Send me an Angel” by Real Life.  (Lyrics)

I have been waking up lately with this song playing in my head. I wouldn’t mind at all having an angel sent to me right now with some guidance and emotional support. Days like this are so hard, but they do eventually get better.  I just have to keep moving forward.  A better day will come.  

 

 

I Can’t Anymore . . .

NOTE: I feel that this writing is lacking, but I am struggling right now and needed to write and release it out in cyber space in order to reduce the build up of emotions inside of me.  I feel there needs to be a trigger warning, but I am not sure what to warn about. There is mention of depression and the thought of wanting to die, but please understand that I am not in any way suicidal. My hope is that this writing may help someone else that is also going through a difficult situation. Now, deep breath . . .

I can’t. I just can’t anymore. I feel so done with everything.  I know I am grieving again, but a person can only take so much emotional turmoil in their life.  I don’t want to have to start over again.  I have done this so many times before.  I don’t feel I have the energy anymore, but I will carry on.  I always do.  I will continue on, but tonight as I type this, I don’t want to.  I am so tired of it all, the pain, the heartache, the feeling of loss.

Oh, gosh, the pain, always with the pain. I am not just talking about physical pain.  I have a lot of that. My body has been degenerating, well, for as long as I can remember.  Ehlers-Danlos Syndrome will do that to you.  What is hurting me more right now, what is gouging at me, is the emotional pain. Physical pain takes a huge emotional toll on a person, but the lack of emotional support from loved ones makes it almost unbearable.  It is so bad that you want to die.

Do I want to die tonight? No, but I want to give up.  Everything I have been fighting to hold on to for almost 20 years is disintegrating right before my eyes.  It might be an archaic idea, but I am the type that bonds for life.  Unfortunately, I bonded with a man who doesn’t hold these same views.

I have written a lot about this man’s behavior over the past several years. It was a way for me to process through the grief and here I am again, grieving over another lost dream.  A dream of a new future, a new start with this same man who I naively thought shared the same dream as I did. 

I was wrong. His lifestyle choice seems to be more important to him than his own family and our relationship.  It is so frustrating.  I know this man loves me and he loves his children, but he is clueless when it comes to doing what is necessary to maintain a healthy relationship. 

There is a pull to be angry, but why? I have been there before many times.  It is an emotion a person needs to go through when processing things, but one needs to work past the anger.  Sadness and loss is what I feel tonight.  Sadness and loss is what I am familiar with when dealing with this particular man.  I guess tonight this sadness and loss is filled with more answered questions, then unanswered.  At least I have that.  For too many years I did not even have that, which only led to high levels of anxiety. 

Tonight, what I feel is depression and the knowledge that I have done all that I can. It is all on him now.  I fear that this is where it will finally stop, my ongoing effort I mean.  For nearly two decades I have tried and tried, but I can’t anymore.  There comes a time when there is enough evidence to show that you have hit a dead end, because you have done all that you can and still have gotten nowhere.   

I have been through so much in my life, so much crap. I have Complex-PTSD because of it, layers of trauma over many years. I am the autistic one, the person whom others have claimed has no empathy, no feelings, and has been called a robot and stuck up, but have also been told I am too emotional and too sensitive. Well, which is it?  You can’t be too emotional and too sensitive, but also lack empathy and feelings.  It doesn’t work that way.

I can tell you with all honesty that I have extremely strong empathy, so much so that it hurts. I have a very hard time separating what I feel from those I am around, particularly those who I care about. I might just not express it in ways that the general population may expect.  I feel it all, though.  I can’t seem to filter it out, just like I can’t filter out sensory input.  It is all bombarding me at once. 

I am a textbook autistic person. I say what I mean and mean what I say.  There is no hidden message and there is nothing written between the lines. I am a blunt and honest person who adheres to the virtues of integrity and honor.  I am also loyal and trusting, much to my own peril.  As a friend of mine once said, people like she and I seem to have a target on our foreheads, because of how we are. 

Where I come from, non-autistic people seem to be the ones who “lack empathy”, at least they seem to be this way towards others who don’t think like them. This same man that I have been referring to has come to some realizations as of late. 

My basic needs are not the same as his. It has taken him a very long time to come to realize this.  How I express my happiness is also not the same as his way as well as what makes me happy is not the same as what makes him happy.

More on this here —-> I am Real, I am Human, and I Feel!

I do not understand why he would have so much trouble understanding this, but he is still struggling with this whole concept.  This non-autistic man seems to be only able to see the world through his eyes, yet I am the one who is said to be lacking in “theory of mind”.  No, I am not lacking in “theory of mind”. I am just different.

——————–

This is my blog that I wrote in July 2013 entitled “Theory of Mind – The Debate Continues” .

Here is Rachel Cohen-Rottenberg’s blog entitled “A Critique of the Theory of Mind” .

And Ariane Zurcher’s blog entitled “An Empathic Debunking of the Theory Of Mind” .

——————–

How do I deal with all of this? I practice mindfulness.  From What Is Mindfulness? :

“Mindfulness means maintaining a moment-by-moment awareness of our thoughts, feelings, bodily sensations, and surrounding environment.

Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them—without believing, for instance, that there’s a “right” or “wrong” way to think or feel in a given moment. When we practice mindfulness, our thoughts tune into what we’re sensing in the present moment rather than rehashing the past or imagining the future.”

I suppose my writing is one way for me to practice mindfulness. Before I started typing tonight I felt like my life was imploding.  The life that I wanted is basically over and I just couldn’t take it anymore.  After putting myself in the moment and allowing the emotions I was feeling to come out in written form, I am starting to feel the pressure that was building up inside me subside.

Deep breaths .  .  . I will not give up. I will get through this. 

Hear My Battle Cry  (A poem I wrote.)

“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.

Hear My Battle Cry

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

Hear My Battle Cry

I will make it through!

I will survive!

Hear my battle cry!

 

I may be hungry.

I may be cold.

I may be in pain.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

I may feel hopeless.

I may feel lost.

I may feel alone and isolated.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

My body may be taxed.

My mind may be flooded.

My spirits may be shattered.

 

But, I will make it through!

I will survive!

Hear my battle cry!

do-not-give-up

Finding Hope

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

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

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

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

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

What kept me going?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The answer:

Because I must!

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

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

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

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

 

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

 

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

― Martin Luther King Jr.

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

explosion

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

My Facebook post from yesterday:

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

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

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

My environment sucks . . .

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

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

What are meltdowns?

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

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

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

What happens during a meltdown?

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

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

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

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

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

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

Here are my past blogs about meltdowns:

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

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

Being Emotionally Exhausted – February 27, 2014

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

Side to Side – May 13, 2015

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

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

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

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

 

I Had an Epiphany . . . .

I had a bit of an epiphany yesterday while at work. How public schools are run is just plain weird.  I know how that must sound.  Here I am a product of the public school system.  I was trained to be public school teacher and have been one for the past 18 years.  Why this epiphany now?

It comes down to the fact that I have been home schooling for the past two years.  The way it is set up in our house is that we combine home schooling and unschooling. Home schooling is defined as “the education of children at home by their parents”.  Unschooling is defined as “an educational method and philosophy that advocates learner-chosen activities as a primary means for learning. While often considered a subset of homeschooling, unschoolers may be as philosophically separate from other homeschoolers as they are from advocates of conventional schooling”.

What this means for us is that I follow all the state mandated educational standards when I create the curriculum that I teach both my children, but the curriculum is geared toward their specific interests and needs using Universal Design for Learning Standards This is true differentiated instruction.

“In EdSpeak: A Glossary of Education Terms, Phrases, Buzzwords, and Jargon, Diane Ravitch defines differentiating instruction as a form of instruction that seeks to “maximize each student’s growth by recognizing that students have different ways of learning, different interests, and different ways of responding to instruction.” – Differentiated Instruction

My son has told me that he feels he has learned more being in a home school setting than he would have if he had stayed in the public school setting. The environment that we have created at home allows my son’s and my daughter’s needs to be met. This allows them to maximize their growth, because they are not constantly bombarded by the constraints and expectations of a public school setting and all the sensory crap that comes with it.

So, what was this about an epiphany?

As I stated, public schools are weird. It is designed to push through large amounts of children, who have been grouped together based on birth year, using boxed up standardized curriculum with boxed up standardized expectations of outcomes and behavior. 

Stand in a straight line! No talking! No fidgeting! Don’t touch the walls! Rush, rush, rush. Test, test, test. Must conform! Must Comply! Must meet standard as dictated by people who don’t know you or your situation. Must complete requirements for things you see no point in and have very little to no interest in. Must do all these things, but you really have no idea why, it is just how it has always been since entering Kindergarten. Also, be social, join a school club, and play sports!!

Then there are the teachers. One person responsible for 30-40 young people. If you are a secondary teacher, that number can be over a hundred or more. Teachers are told they must use differentiated instruction, they must use the canned curriculum, and they must use whatever strategy –de jour the administration or the state has said teachers must learn and use but with limited resources and extra unpaid time.

Um . . . . .

Do you see a problem here?

I understand the need for order. You cannot maintain 30-40 young people without some sort of expected procedure. I understand why a canned curriculum is convenient. A time table is set. Certain concepts have to be covered in a given time period. Everyone is getting access to the same education, right?

Unfortunately, that is not true. A one-sized model, or in this case, one-sized general education setting model actually ends up leaving a lot of kids behind with many falling through the cracks of this system of funneling kids through. It is impossible for one teacher to provide differentiated instruction to everyone when classes are so large, and those who actually get access to it, usually those with IEPs, well, it can be questionable. Is it really quality differentiated instruction? This infographic goes into what differentiation is and what it isn’t.  

Get them to graduate! That’s the point! After that they are on their own. Just get them to graduate!

Ya . . . . .

Over the years I have taught Kindergarten through 12th grade and I have heard that many times in one form or another. Just get them to graduate. I for one feel as a teacher that getting a student to graduate is not the end all be all of our profession.  What about actually educating these kids?  What about actually instilling the love of wonder and the desire to learn instead of shoving standardization down their throats?

schoolsfish

Schools are seen as factories and non-educators are mandating reforms that treat students like products, products that can take anywhere from 13 – 16 years to make. Yet, these non-educators in power are not seeing the return on these products as fast as they want and these products are not up to performance standards that they established without any teacher input. Here is the thing, CHILDREN ARE NOT PRODUCTS!!!!! THEY ARE ALSO NOT NUMBERS!!!

Children are living, breathing, emotional beings and each one of them is unique with unique interests and needs.

Sure, public schools get the job done, sort of. According to data gather by GOVERNING from the National Center for Education Statistics, Common Core of Data State Dropout and Graduation Rate Data, “U.S. public high schools recorded a four-year graduation rate of 80 percent for the 2011-12 school year, an all-time high. Graduation rates vary greatly by state and race. Nationwide, black students graduated at a rate of 69 percent; Hispanics graduated at 73 percent; whites graduated at a rate of 86 percent.”

That 80% is considered average and it is what they are calling an “all-time” high as of 2012. What about the other 20% of high school seniors who did not graduate? Again, this is an average. The number actually varies from state to state and varies by race.

My children are still in high school, but if it wasn’t for the option of home schooling, I fear they would have been part of that 20% failure rate by no fault of their own. We didn’t choose home schooling out of some thinking that public school was this horrid thing or for some sort of religious reason. We chose home schooling due to the intolerable environment of the public school setting becoming too much and my children becoming no longer able to cope with it.

SIDE NOTE: Before anyone suggests private school, no, we cannot afford a private school even if we wanted it and the only private school available near us is a private religious school. We are not religious.

My children made it through public school up until middle school. That is when everything began to fall apart. They struggled up until then, but they were making it with a lot of advocacy on my part.  I taught in the same elementary school that they both first attended. We were lucky in that regard and it helped immensely.  Unfortunately, we were in a small rural community who felt special education was just a babysitting service.  Teachers just started trying their best to support students on IEPs, because the special education department pretty much failed at following  IEPs and failed helping teachers to make specific accommodations that these students needed to be successful. We could have sued the district for failing to adhere to my son’s IEP and for refusing to put my daughter on an IEP when she was struggling more academically then her brother.  We decided to move instead due to my job as a science teacher being cut to less than half-time due to budget cuts.

We tried another school district. My son made it through another year and a half before the special education teacher at the middle school told me that they didn’t know how to help my son. His Agoraphobia and Misophonia were debilitating him so badly that he could no longer attend classes. My son is an independent learner, so this allowed me to continue working. My daughter soon followed her brother in home schooling due to a family trauma. She could no longer handle a full day of school, but she is not an independent learner. This complicated me working. I went from working multiple part-time jobs, to only working one.

Last year she started high school. Things started out okay, attending half-days, but things went spiraling out of control second semester. She ended up in a psychiatric hospital for adolescents. After seven years of trying to get her on an IEP, she finally has one. It took for her to have what we think was a psychotic episode for the school system to finally wake up and see that my daughter had specific needs that they were failing to acknowledge and address simply because she was quiet and not considered a behavioral problem. This was what I was continually told as to why the school system never put her on an IEP. She was an easy person to push through the system. She was a quiet student who didn’t cause problems and who worked her butt off every night trying to meet standard. It was exhausting for her and she ultimately ended up failing and stopped going to classes.

How often does this happen to high school kids around the country? My daughter is autistic, has bipolar, and has multiple learning disabilities that the school failed to address.  How often do kids just give up, because the system failed them?

Here we are, in another new school district, in our third year of home school/unschooling with both my children in high school attending a Home Link program two half-days a week with a dash of public school services thrown in every weekday morning to cover my daughter’s IEP requirements. This Home Link program requires 25 hours of educational time each week and my children have two additional teachers besides myself. We are three weeks in and so far so good.

Crossing my fingers and knocking on wood that my daughter will graduate high school in 2019 and my son will graduate high school in 2020. These next four years are going to be tough. With my family responsibilities, I am only able to work maybe a few times a month as a substitute teacher. Our income is limited. I have to do this for the mental and emotional well-being of my children, but not everyone can do this, though. Most people can’t.

Eighteen years ago I became a teacher. As an undergraduate, we were told then that the education system was archaic and broken. After all these years as a certified professional teacher, I can say that the system is still archaic and broken. The non-educators in charge have only tried to apply Band-Aids to a situation they know nothing about and have systematically stripped the power of teachers to do anything about it on their end.

Public school is weird and I have no answers.

I am going to end with a song by Hank Green called, “This isn’t Hogwarts! A Harry Potter Song”. It seems fitting.

“I Don’t Know What To Do.” – A Parent’s Dilemma

NOTE: This blog was posted with my children’s permission. It may be removed at any time if my children feel they no longer want this information shared in this public format. Information contained in this blog involves the struggle with mental illness in conjunction with autism. 

Trigger Warning: Reference to suicidal thoughts and plans for suicide. 

I don’t know what to do.

For seven and a half years we have been trying to find the “right” path, the “right” combinations of medications, the “right” program for school, the “right” way to handle issues at home. I don’t know what the “right” way is anymore.

You can’t help a person who doesn’t want to be helped.

I have to keep reminding myself that. You can’t help a person who doesn’t want to be helped.  All you can do is give them a door and directions on how to go through that door.  They have to decide if they (1) want to go through that door and (2) if they want to put in the effort necessary to go through the door.

Even if they do what is necessary to go through the door, they also have to keep putting in the effort to be able to stay on that other side of the door. If they don’t, they fall backwards.  I understand that maintaining that effort is hard, especially in the beginning.  It is like one step forward and two steps back. This is why proper support is so important.  It keeps the person from sliding too far back.  They need a hand to hold on to, a hand that can help guide them, especially on those really difficult days

The thing is, that hand that is always there can only do so much. That hand can beg, plead, bargain, demand, surrender one day only to try again the next.  The hand can keep doing that day after day, but that hand will start to question how long they can keep at it. How long do they keep putting in the effort when the other person that they are trying to help refuses to grab hold? How long do they allow the other person to continue to disrupt the lives of others in the family? 

It sounds selfish, I know. A parent should not waiver when helping their child.  A parent needs to be there always, right?

I just don’t know what to do anymore.

We have tried so damn much, even tried things multiple times just to make sure. This week my oldest will be ending her 90 day outpatient treatment program and I am afraid for her.  I am afraid what is going to happen next and the stress that it will put on her and our family. The first month and a half had been very promising.  She was calmer than I had seen her in such a long time.  She was excited to go the program. After losing three months of school due to emotional distress, she actually wanted to go to this school/counseling/outpatient program.  Unfortunately, things have taken a rather negative turn.  Over the last month and a half and she has had two depression break through periods.

She never made it to the program last week and only managed three hours of school work. That doesn’t bode well for passing 10th grade.

Seven and a half years ago, my daughter was diagnosed with bipolar. Over the years, that diagnosis evolved into Bipolar II and Autism Level 2 with accompanying expressive language impairment.  She has started on psychiatric medication when she was only eight years old. She has been on as many as six different medications at a time taking them 3 – 5 times a day and still we have been no closer to establishing stabilization of her moods.  She will tell you that the medications have slowed down her mood fluctuations, but that is it. The official term for the type of bipolar she has is Juvenile Onset Bipolar – “Fear of Harm” Phenotype that is ultra-rapid cycling. 

For more information about “Fear of Harm” Phenotype – The 6 Dimensions of the Fear of Harm (FOH) Phenotype

For more information about rapid cycling Bipolar – Rapid Cycling and its Treatment

She ended up in the hospital this past spring due to hallucinations and suicidal thoughts. The voices were telling my daughter to use knives to kill herself. At that time it was thought that maybe what we are dealing with is Schizioaffective Disorder – Bipolar TypeMy daughter has talked about her hallucinations for years, but this was the first time the voices were telling her a suicide plan.  Only time will tell if her diagnosis evolves again.

Whatever my daughter is struggling with, we have yet to find a combination of therapy and medications that will help her stabilize. Our goal is six months of stable moods before we consider her stabilized.

It is not just the rapid mood cycling that is causing issues, it is also the mixture of bipolar and autism. Problems arise, because treatment for one will cause the symptoms of the other to worsen. This requires a very delicate balance of care.  There is also her age to consider.  In the state where we live in, once you turn 13 years old, you have a choice regarding your mental health care.  You can chose to not receive care, you can chose to not have your therapist disclose information to your parents, you can chose outpatient or inpatient care.  Inpatient care can be involuntary, but that takes a very long paper trail documenting pain, struggle, and failure.

We were fortunate enough to be able to have access to the outpatient treatment program that my daughter is just now finishing. It is two hours away from our house and it is an all-day affair (8:00AM to 4:30PM) Monday – Friday. At first it was workable.  It was summer time. I wasn’t working (I’m a teacher). We had been able to get fuel vouchers from Special Mobility Services, but only for a short time.  Our fuel vouchers were revoked for reasons we still do not fully understand and neither does the treatment center nor my daughter’s counselor. 

I live in a state that is rated 49th in mental health care.  What the treatment facility told us was that we had fallen victim to a system that is broken. There was nothing we could do.  I wasn’t going to pull my daughter out of a program that was helping and that she wanted to attend. This meant paying for all that fuel ourselves.  We are a low income family. Having to pay for the fuel in order to get my daughter needed medical care has put a considerable financial hardship on us.  Food is scarce in my house. Bills are paid late or are only partially paid. I stay in town for 8 ½ hours at the library Monday – Friday waiting for my daughter to finish her day, then we drive two hours to get home.  Most days my son joins us so he doesn’t have to be home alone.  We don’t have internet at our house or television services.  Being at the library allows my son access to the internet so he is able to work on school assignments.

Both my children are autistic and both are students of our local Home Link/homeschool program. They have recently started school in a third school district. The first failed to follow my son’s IEP, the second was honest with us about not knowing how to help my son. When people ask my son why he is in home school, he often tells them, “The school district didn’t know how to help me with my mental illness”.  He has debilitating anxiety issues (Generalized Anxiety Disorder, Agoraphobia, and Social Anxiety) as well as depression. He also has misophonia  which causes considerable problems for him. Just to be clear, Autism is not a mental illness.  It is a developmental disorder.  When my son speaks about his mental illness, he means exactly that.  He is not talking about his autism.

For more information about Misophonia – The Symptoms & Triggers of Misophonia

The first school district refused to grant my daughter an IEP citing loopholes as the reason. When we moved to the second school district, we discovered that she was three years behind her peers in reading ability. I ended up getting my daughter a private tutor to reteach her how to read and my son how to write. My daughter has gained ground these past four years, but is now four-five years behind her peers in reading ability.  It took nearly four years and a hospital stay before the second school district granted my daughter an IEP.  Both my children are highly intelligent, but struggle with learning disabilities.  Both have dysgraphia and my daughter also has dyslexia. Both need extra social and emotional support at school.

All four of us, both of my children, my husband, and me tend to have paradoxical effects from medications that are designed to affect the brain in some way. If not paradoxical effects, then no effects at all, meaning no benefit from the medication. Whether it is psychiatric medications (all of us) or pain medications (mainly me) it just doesn’t work for us.  Between adolescence and the sensitivity issue with medication, finding the “right” combination of medication has proven to be quite a challenge for my daughter. 

The most recent change was introducing Lithium. Yes, Lithium, the go to drug for bipolar, has been tried. It affected her bladder, her eyes, and caused agitation. Her body also metabolized it too fast. We could never get a high enough therapeutic dose in her body and the medication was increased three times to pretty high levels. We went back to using Tegretol which she has had some success with in slowing down her mood cycles. Hydroxyzine, which is an allergy medication, has helped with her high levels of anxiety. It is fast acting, but not enough. She was also taking Geodon (another mood stabilizer) that helped strengthen the effects of the Tegretol, but has since stopped due to insurance problems with getting that particular medication. She takes medication three times a day and is able to add a smaller hydroxyzine dose two more times to address her anxiety if needed.

Next week she starts half-day attendance at our local high school where she will receive the services listed on her IEP. The rest of her schooling will be at home.  This past week she fell into another depression period. She stopped caring for herself, stopped caring about anything, becoming defiant and aggressive. 

Part of this is not her fault. She has no control over what her brain does.  What she does have control over is using her skills, not hurting people verbally or physically, and wanting to get help. I understand that when you use up too many “spoons”, using your skills is just not an option.  I get that.  I have been there many times.

I don’t have the same struggles as she does, but I am personally familiar with some of them, and I also have the advantage of being an adult. I have had years of practice in developing my coping skills. I am autistic as well.  I struggle with debilitating anxiety and I also struggle with depression and Complex-PTSD, but I don’t have bipolar.  I have no idea what it is like to be at war with yourself in the way she describes.

I can help guide her in calming strategies and help her establish a sensory friendly environment. I can help her break down her school work into more understandable parts. I can remind her to take her medication and I can take her to her counseling appointments. I can advocate for her both with the doctors and with the school.  I can be there when she needs a hug and encouraging words when all her internal struggles become too much. I can tell her that I love her and will always love her even when her brain is telling her that everyone hates her or when her brain tells her that she hates everyone.  I can be that hand that is always there for her, but she needs to put in effort as well.

I can’t do everything for her. I understand that she is developmentally delayed, much more so than her brother and me, but she is also a teenager with typical teenage behaviors. She does not need to be coddled.  She needs to be treated as the 15 year old that she is.  She is a capable person, but either doesn’t believe it or doesn’t want to be. She regularly pulls out her helpless card citing that she can’t do anything; this includes school work, house work, and any every day thing.  She doesn’t like to be told that she is 15, but says instead that she is nine years old or six years old depending on the day and the level of her anxiety.  Sometimes she is clearly 15 years old and makes it well known, especially when she wants to control everything and everyone. The age she feels fluctuates with her moods.

I often remind myself, particularly on harder days, of all the amazing things that makes my daughter who she is. She loves Doctor Who and Star Wars.  She also loves Science Fiction, Action Adventure, and Fantasy. Her, her brother and I often communicate using echolalia from these different genera.  She speaks the language of science and often talks about becoming a limnologist when she grows up. She is the “Blue Earth Saver” as she is known on the computer games she plays.  She loves animals and is so gentle with them.  She is an incredibly perceptive and empathetic person who is deeply affected by stories of war, violence, death, and struggle. Her school work has to be adjusted for this reason.

My daughter is such a strong person and has such clarity when she is between mood swings. She has been through more crap during her short time on this planet than most adults have had to deal with their entire lives. This is why I think she is tired.  She is tired of the constant struggle.  She is tired of nothing working.  She says the medications just covers things up, just a Band-Aid, they don’t work. She tired of the constant war in her head and feeling afraid to leave our house. She is tired of everything hurting. Too bright, too loud, too rough, too many expectations, no understanding, no order, no predictability.  Home is safe,  home makes sense, home is where her things are, home is where her pets are, home is where she can escape into unconsciousness and sleep the day away.  

Therein lies the problem. She has been progressively giving up. Giving up her dreams of the future, giving up trying to do well in school (she was on the honor roll all through middle school), giving up on practicing her skills, giving up on trying to work with the family as a team, giving up self-care, just plain giving up on everyone and everything.  She is done.  That is it. No more trying. She is done with it all.

With the days getting shorter and colder, she is already beginning to slide backwards. The outpatient center was helping her, but continued progression requires her to put in the effort. She is done.  No more effort. 

So, what does a parent do in this situation? Just let her continue to decline?  Have her end up back in the hospital over and over again?  Have a judge end up finally taking her rights away so she can become an involuntary inpatient? Have a judge take mine and my husband’s rights away as parents which would lead to her being pulled out of our house and put into the system where a social worker controls her life?

These options are unacceptable to me.

I don’t know what to do.

I don’t know what else I can do to help her.

Seven and a half years of fighting for services from the schools, doctors, and the government. Seven and a half years of struggling to find the “right” combinations of medications. Seven and a half years of constant questioning and research on my part in trying to settle that little voice in my head that says we are missing something. She shouldn’t be struggling so much. WE ARE MISSING SOMETHING!!!!

Her autism wasn’t diagnosed until she was 10 years old, two years after she was diagnosed with bipolar and a year after her brother was diagnosed with autism. When she was a toddler, she was tested twice for autism, but they told me she didn’t have a high enough score for the diagnosis.  What I didn’t realize at the time was that they were using a criterion that was biased towards boys. I had to push for her to be reevaluated to check for autism, because once she was put on medication, her autistic traits started to really show. The bipolar was overshadowing her autism.  I had to push to have her evaluated for learning disabilities.  I knew as a teacher and a mom that something wasn’t right, but, once again, she was over looked.  She wasn’t a behavior problem at school.  She was quiet and could be ignored. I had to get outside professionals to evaluate both my children, because the school didn’t see a problem, didn’t see how they both struggled far too much.

I have actually fought for longer than seven and a half years. I have fought for my children’s well-being since they were born. I have been a parent for 15 ½ years.  I am also tired and I am running out of options. 

My hand is there and I will continue to offer it to my daughter no matter what, even if she doesn’t take it. I am a parent.  It is my job. I am not giving up on her. She is my Sunshine and always will be.