Category Archives: Autistic Burnout

Personal Responsibility, Self-Advocacy, Education, and Support

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I WANT TO LIVE!!

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

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

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

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

I HAVE WORTH!!

I MATTER!!

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

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

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

Hear My Battle Cry

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

Hear My Battle Cry

I will make it through!

I will survive!

Hear my battle cry!

 

I may be hungry.

I may be cold.

I may be in pain.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

I may feel hopeless.

I may feel lost.

I may feel alone and isolated.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

My body may be taxed.

My mind may be flooded.

My spirits may be shattered.

 

But, I will make it through!

I will survive!

Hear my battle cry!

do-not-give-up

Finding Hope

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

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

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

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

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

What kept me going?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The answer:

Because I must!

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

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

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

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

 

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

 

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

― Martin Luther King Jr.

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

explosion

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

My Facebook post from yesterday:

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

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

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

My environment sucks . . .

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

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

What are meltdowns?

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

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

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

What happens during a meltdown?

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

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

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

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

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

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

Here are my past blogs about meltdowns:

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

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

Being Emotionally Exhausted – February 27, 2014

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

Side to Side – May 13, 2015

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

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

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

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

 

The Hidden Meaning Behind “I’m Tired”

What comes to mind when a person tells you they are tired? Do you ask them if they didn’t sleep well the night before?  Do you start talking about changing diets or increasing their amount of exercise?  Do you think of anything at all or do you just nod your head and start chit chatting about other things?

I don’t remember the last time I wasn’t tired. I am perpetually tired.  The word “tired” doesn’t even seem to be an appropriate word for how I feel, but I don’t know what other word to use.  Exhausted? Fatigued? Overloaded? Drained? Burned out? Stressed beyond what would be considered acceptable levels? 

In September 2012, I began writing publicly about my journey with my family. That was eight months after I was diagnosed. I was the third in my family to learn that I was in fact autistic.  We each also have our own co-existing conditions that manifest themselves in ways unique to each of us.  We might share diagnostic labels, but how these conditions present themselves is different depending on whom you are talking about.  Age, personality, genetics, and environment all affect how these presentations occur.

This all plays into what it really means when a person says they are tired. Looking back over my old writings I see that there are common themes in many of them: exhaustion, stress, pain, burnout, and making it through it all.  

When asked how they are doing both my children often have a scripted response of “I’m tired.” That simple two word response is actually a very loaded response. Hidden behind these two words is a long story of struggle, confusion, stress, frustration, pain, and exhaustion.

How does one go about breaking down all the components of “I’m tired”? Do you even try or do you just shrug it off, because you don’t know how to respond to it?  You see the person who said they are tired still getting through their day with everything that is required, so maybe you think their tiredness really isn’t so bad? Maybe you don’t stop and think about the reasons behind their tiredness and just add more to their already full plate. Maybe you are unaware of how their plate changes sizes depending on the day, so you just keep loading more things on them. More requests, more demands, more expectations, more and more until the person either explodes or shuts down.

Human beings are amazing creatures. They can take a lot of shit before it is just too much and their bodies and minds simply cannot endure any more.  Resilience, determination, patience, and stoicism are aspects of me that have gotten me through so much crap in my 41 years on this planet. I endure. I go on.  I keep moving forward, because there is no other direction for me to go.

I’m tired, sooooo very tired. I often wonder if there will be any time in my life when I am not tired.  I think there will be. I really do.  There has to be.  My brain cannot fathom that there will never be a time when I can say I am not tired, so I keep moving forward.  I look forward to that day when I am no longer tired, a day when I can wake up in the morning and actually feel refreshed.  It has become a quest of sorts.  A day free of exhaustion!  That will be an awesome day.

A few past blogs about exhaustion, burnout, and resiliency:

Here I am Again – The Long Road of Living Exhausted

Being Emotionally Exhausted

Exhausted All The Time

Here is the blog I wrote about resiliency.

This blog was a response of mine to Musings of an Aspie’s blog that is entitled “Autistic Regression and Fluid Adaptation”.

Here are some helpful Tumblr blogs about autistic burnout.

 

Checking My Privilege

I am sitting here at my computer feeling the need to type, but not knowing what direction to go. During times such as these, I let my fingers move across the keyboard and let the words come out of me.  I am tired.  Looking through my archive of previous blogs on Tumblr, being tired resonates through many of them, but the word “tired” doesn’t even begin to explain what I feel.  I am burned out . . . again.  It is that time of year when I typically reach this point of not wanting to return to the stress of the reality of my life.  I know what I do is important, but I am tired and I am only one person.  I need rest.  I need a break from everything I do and I need distance from the reminders of all the responsibility that I must maintain.Burnout

More information about burnout – Here I am Again – The Long Road of Living Exhausted

Being broke only makes the stress worse. I will not have enough at the end of the month to pay rent.  I am behind paying my utilities due to trying to scrape enough to pay the rent and it is still not enough.  My vehicle had been parked for the last five days due to not having money for gas or enough money to pay my car insurance monthly payment.  I am also once again stuck on the employment page of my medical insurance renewal page.  The system always gets stuck on this page every time I try to renew, every year.  Why this happens is anyone’s guess.   I am a teacher employed by my local school district.  I am part-time, meaning I am ineligible for insurance through my employer. The system doesn’t seem to want to accept that concept.  Also, now that my daughter is 15 years old, she is now listed on the employment page, which only seems to confuse the program more.  It won’t accept that she doesn’t have a job.  The program won’t let me get past the employment page. Who designed this set-up?

What are my fingers doing? I have realized that I have digressed into whining. I suppose this happens when you are depleted of spoons and are feeling helpless.  There is a long, long list of stressors I could whine about that has brought me this this place, but I am not going to do that.  Sinking into negative thinking and digressing into whininess doesn’t help anyone.

Rack_railway_turnout_(SPB)Sure, sometimes venting is a necessary step to release frustration, but there is a time and place for that. What my brain is attempting to do is not venting, it is whining, and I need to switch tracks.  Whining will only bring me down further and further into that horrible feeling of helplessness.  I need to refocus my brain.

Recently I have found myself thinking about how privileged I am. When people think of what it means by being privileged, what usually comes to mind? Lots of money?  Big house?  Fancy car? Being able to do what you want when you want to? Being able to leave your house without fear? The list can go on and on.

Privilege is defined as

  • special advantage or immunity or benefit not enjoyed by all
  • a right reserved exclusively by a particular person or group (especially a hereditary or official right)

“Privilege comes from Latin privilegium, meaning a law for just one person,got privilege and means a benefit enjoyed by an individual or group beyond what’s available to others. Someone wealthy come from privilege. Someone with a library card has borrowing privileges. Privilege can also be used as a verb. If you are on a committee giving away scholarships, you’ll have to decide whether to privilege students from poor backgrounds or the students with high test scores.” (Source)

I am going to throw out some labels here in order to paint a picture. I am an autistic female, cisgender, heterosexual, Caucasian, mother of two autistic children with various coexisting conditions, and I have additional coexisting conditions of my own, including PTSD, that make my life difficult at times due to how society is designed and my triggers.  I may look “high functioning”, but looks can be deceiving.  I struggle on a daily basis, both physically and mentally.  Just like everyone, I have good days and bad days and some days in between.  I am also highly educated, but underemployed and have been living below the poverty level for a family of three these last few years.  With some of these labels, society has and will continue to present me with certain privileges.  With other labels, I have been and will continue to be misunderstood, mocked, and looked down upon.  Even with that, I am still a privileged person.

food stamps.pngI will admit it; I am on food assistance (which doesn’t make it to the end of the month) and on Medicaid. I even go to the food bank when it gets really bad. I am grateful that my community has such a place.  My children and I are not starving and we have access to medical care, because my state expanded Medicaid coverage. We also have a warm house to sleep in.  Our house is small, but it is enough, and I have not given up on figuring out how to pay for rent this month.

As for utilities and other bills, well, some of the companies let me pay what I can, adding to the bill each month. Others insist on payment, those get paid first. At the moment, we have high speed internet service and a home phone line.  I have a flip cell phone that I use for emergencies and to be in contact with my teenage children, school, and doctors when I am not at home. There is nothing fancy about it and I pay $20 a month for service.  We haven’t had television service in, oh, probably eight years or so, and we don’t miss it.  We have Netflix instead and an old VCR/DVD player to watch movies.  Our television is 10 years old, I drive a 13 year old vehicle, and our three laptops are old and essentially “frankensteined” together, but I am grateful to have access to these technologies.

There are no buses where we live. If you don’t have a car, you walk or get a ride from someone else.  We live in the middle of town, so when my vehicle is out of commission (which has been happening more lately due to its age and high mileage) we walk everywhere. My children have clothes that fit them and winter coats to keep them warm.  A Secret Santa provided us with new winter hats and gloves, which we really needed, and our various critters are warm, fed, and loved.

Another privilege is the fact that I am in graduate school. I am a semester away from finishing my Master’s degree in Education with an Autism Certification.   That student loan that I have taken out each year for the past four years is what has been paying the bills.  Granted, I will be very surprised if I will ever be able to pay it off, but my ability to get those loans is definitely a privilege.

The last privilege that I want to address is the wonderful miracle that has happened. The man I fell in love with 17 years ago, and the father of my two children, has come home after three years of being a stranger and leaving us. I never gave up on him even though he had given up on himself and our family.

Untreated mental family_cats_portrait_002health issues and unprocessed trauma from childhood finally took its toll on him. He had become a lost soul who needed to go the long way around to find his way back home.  We still have work to do, still processing trauma and rebuilding trust, but we are determined.  We are learning to be a family again.  To me, that is a huge privilege.

So, what is the moral of this story? What is the message that my fingers are trying to convey to my brain?  During tough times when the stress of life is boring down on you, remember the privileges you have. You have been through so much and have come so far.  This too shall pass.

“But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful.”

**All images are linked with source.

 

Choosing the Path of Advocacy – A Personal Commitment

guidetoheartI have always followed my passions for as long as I can remember. I have always been very goal oriented and my goals follow my passions. I go where my passions lead me; unfortunately the road has been anything but easy. I am an autistic adult. To be more specific, I have Aspergers, but I didn’t know it until I was 36 years old.

For one of my classes, I was required to read Indian Creek Chronicles, written by Pete Fromm. This book is a personal journal of Fromm’s account of seven months spent alone in a tent guarding salmon eggs in the Selway River Valley in Idaho. Unlike Fromm, who had opportunities “fall on his lap”, I had to plan and work hard to follow my passions. I grew up not knowing I was autistic, I didn’t have any help and I struggled, but I was determined.

Growing up, I didn’t have to listen to the things that are said about autistics today. I wasn’t told that, because I am autistic, I couldn’t get an education, or be gainfully employed, or have a family, or be considered a danger to society. This is what kids are hearing these days and it is totally false. These days more and more kids are getting services at school, teaching them skills that for most people seem to be intuitive. I never got services, but I persevered and I followed my passions. It cost me though.

Autistic burnout ListI have experienced Autistic Burnout multiple times. The first time was the worst, because it was associated with me developing PTSD from a medical trauma.  We didn’t know I was autistic at the time and did not understand what was happening to me. I got the wrong help and it took years to climb out of the darkness I had fallen into. Autistic Burnout can cause a person to lose their ability to function. At the time all I knew was that I had two little people who needed me, my son and my daughter. I had to keep going. I still feel the pull of that darkness from time to time.

To keep myself from falling back where I was I have to pay close attention and make sure I rest when I feel overloaded. I have to reduce triggers whenever I can. This can be very difficult as a teacher. Even though I love to teach, it has taken a toll on my mental and physical wellbeing. I have had to make adjustments. Even though I am an adult, I still experience meltdowns. You don’t grow out of them; you just learn how to handle them better. I have to allow my body to go into what I call “shutdown mode”. I need to allow my body to reboot itself so I don’t go back to that dark place.

C-S-Lewis-Integrity-e1368209736261Through my journey of discovering my neurology and that of my children, I have found that I am very passionate about advocacy. Due to what I have been through, I have an understanding of the struggles many people face.  Social justice is something that seems to be felt strongly amongst the variety of autistic people that I have encountered.  I am no different.  I seem to have this very strong inclination to always do the right thing, whatever the right thing may be even if it hurts me in the process.  Things such as honor, integrity, and respect are all virtues that I hold very dearly. These virtues were not necessarily taught to me.

I come from an emotionally abusive home life, and I was determined to rise above it, not allowing the abusive pattern of generations of my family to be passed on to my children.  I was determined to put an end to it.  This determination spread out not only to my children, but to my students and then to my community as well.  The abuse, the lack of understanding, and the lack of willingness to provide accommodations and modifications that allow another to reach their potential needs to stop.  We are all humans regardless of our neurology.  We all feel emotion.  We all think. We all have a “voice”.  We all have our individual strengths and weakness.  This means we all need each other to make it through our days. No one is fully self-reliant.

declaration-independence2How do you get people to see that a person who does not function in a typical fashion is still a valuable member of society, that they deserve the same rights and as the others that do function in a manner that is typically expected? This is where advocacy comes into play. Advocacy is when you not only fight for change in policies that negatively impact peoples’ lives, you are also providing a possible solution to a problem and building support for acting on both the problem and the solution.  Examples would be fighting for the right to be educated, marriage rights, voting rights, housing rights, and reproductive rights, disability rights, fighting for clean water and clean air, and fighting for healthcare for all.  If advocacy is about fighting for your own rights and the rights of others, then what is self-advocacy?

According to Wright’s Law, “Self-Advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination.”

Wright’s Law also explains the reason why self-advocacy is so important. It is “so that you have the knowledge needed to succeed and are given the chance to participate in decisions that are being made about your life.”

KeychainThis is why organizations such as ASAN (Autistic Self Advocate Network), GRASP (The Global and Regional Asperger Syndrome Partnership), AWN (Autism Women’s Network), and many local organizations such as ANUE (Advocates for Neurodiversity and Unique Empowerment) in Spokane, WA, for which I am a Founding Member of, are so important to people like my children and I. These various groups are membered by advocates and self-advocates who provide, information, support, and possible solutions to problems that people are having.   These organizations give a voice to those that may have not found their own yet or help make voices that are being silenced and ignored even louder.

Notice that I did not list Autism Speaks.  Autism Speaks tends to cater to parents and family members of autistic people, not the autistic people themselves.  Autism Speaks has a habit of promoting fear about Autism instead of acceptance.  They promote eradication through their push of finding a cure instead of promoting the message that autistic people have value in our world.

How does one help an advocate and a self-advocate? First, listen to them. Their concerns are valid and ignoring them and explaining that it is not that bad or the problem does not exist does not help people.  It makes the situation worse. Second, help a self-advocate understand their rights and responsibilities.  Self-advocacy is about empowerment and the more knowledge a person has about the problem, the better prepared they are in finding a solution. Third, help with stress management.  Advocating for yourself and others can take a heavy toll on you, mentally, emotionally, and physically.  Self-advocates need support and understanding and so do advocates.

I was never taught about advocacy as a child and I had no idea how to be a self-advocate, but that did mean I couldn’t learn as an adult. I first learned to be an advocate when I became a parent.  Something in me was not going to let the same negative things that happened to me happen to my children.  In the process of learning to be an advocate for my children, I learned to be an advocate for myself.  For me, it has been harder to be a self-advocate than an advocate.  This is why support is so essential.

helping handI have found some amazing people to help me along the way.  Like the people at the Arc of Spokane and the people involved with ANUE.  I have also been able to build a support network online as well.  Help is out there, but it is not always easy to find.  I often tell people right at the beginning that they are not alone.  I spent too much of my life alone, without a voice, and no way to ask for help.  I don’t want anyone to feel like I did.  Even if I can’t help the person directly with their problems, I know that I can at least let them know that they are not alone and that they will make it through.  Appropriate words of encouragement can go a long way in helping a person through difficult times.

The statements below contrast encouraging statements that imply faith and respect with discouraging statements that convey doubt and disrespect.

THE LANGUAGE OF ENCOURAGEMENT (Evans, 1995, Dreikurs, Grunwald, & Pepper, 1982)

Encouragement “I think you can do it.” “You have what it takes.” “You’re a hard worker.” “What do you think?” “I could use your help.” “It looks like a problem occurred. What can we do to solve the problem?” Discouragement “Here, let me do that for you. “Be careful; it’s dangerous.” “Don’t forget your assignment.” “Let me give you some advice.” “When you’re older, you can help.” “I told you to be careful.”
Encouragement “You put a lot of effort into your work.” “You’re a fine person.” “I know you did your best.” Praise “I’m proud of you when you do well.” “You did better than anyone else in the class.” “Next time, if you work harder, I know you can get an A instead of a B+.”

In life, I follow the three C’s – you have to make a choice, to take a chance, or nothing will ever change. My choice is to make the world a better place through advocacy and education.  As an advocate:

  • I pledge to create an environment of encouragement rather than discouragement.
  • I pledge to fight for the rights of others whose voices maybe silenced or ignored.
  • I pledge to fight misconceptions and educate those who insist on spreading those misconceptions.
  • I pledge to provide a respectful ear to those who need to be heard, but don’t know where to turn.
  • I pledge to help people achieve success by providing solutions to problems, instead of just saying it is not my problem.
  • I pledge to do what is right in the face of adversity.

“One voice can change a room, and if one voice can change a room, then it can change a city, and if it can change a city, it can change a state, and if it change a state, it can change a nation, and if it can change a nation, it can change the world. Your voice can change the world.”

– Barack Obama

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References

Berrington, Lucy. (2013, Nov. 14) A Reporter’s Guide to the Autism SpeaksDebacle. Psychology Today. Retrieved from https://www.psychologytoday.com/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle.

Goodreads. Barak Obama Quote. Retrieved from http://www.goodreads.com/quotes/62978-one-voice-can-change-a-room-and-if-one-voice.

Evans, Timothy. (2005, Feb.) The tools of encouragement. Online Journal of the International Child and Youth Care Network. Retrieved from http://www.cyc-net.org/cyc-online/cycol-0205-encouragement.html

Wright’s Law. Self-Advocacy. Retrieved from http://www.wrightslaw.com/info/self.advocacy.htm.

Zurcher, Ariane. (2013, Nov. 13) What’s Wrong With Autism Speaks? Emma’s Hope Book. Retrieved from http://emmashopebook.com/2013/11/13/whats-wrong-with-autism-speaks/.

** Each image is linked to its source.