Tag Archives: Stress

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.
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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.