Category Archives: Surviving

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.

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.

I am Real, I am Human, and I Feel!

Imagine that you are having a serious conversation with someone that you have been involved with for almost 20 years and they end up telling you that they don’t know what makes you happy.

How would that make you feel?

Distraught? Shocked? Beside yourself? Dumbfounded?

How about all of the above?

This scenario actually happened to me recently and it was all of the above for me. There I was with someone I had devoted my life to and this person had no idea what makes me happy.  How could this be?  I knew this person inside and out.  How could they not know me?

I had to give myself sometime to process this revelation and to figure out how this was even possible. I have encountered this type of thing before, but never at this level.

 I was told growing up that I was stuck-up just because I didn’t talk much. As an adult I have been asked by a close family member if I even had feelings. I have been referred to as a robot numerous times.  I was told by my second OB-GYN that I was the most stoic person she had ever known. This comment was made by this doctor after I had a traumatic pregnancy where I had almost lost my son and that had almost left me paralyzed.  Based on my extensive damage and amount of pain I was in, she had expected me to be in a ball on the floor weeping, but instead I was calmly sitting in a chair talking to her.

The person mentioned in the beginning will tell you that I am actually a very emotional person.  I wear my emotions on my sleeve, so to speak.  I can’t hide them. My emotions are out and they are strong.  I feel things very intensely, so how do people not see this? Why am I invisible?

According to Jean SequeiraTo be happy one needn’t feel content, yet they do go hand in hand. Happiness is self defined. Let me word it as I percieve being happy. Happiness is purely a state of mind,  so being happy is being in the flow of feeling good, irrespective of anything. Most of us in todays time, it is “I am happy becoz of this this this ….” and the list goes on,when that this this this is no more, then u move down to feeling low/sad/depressed. Being content is a level of acceptance to the now, there is no demand for more, it is just being happy with what it is, so indirectly contentment also leads to being happy.”

How often do autistic people’s ways of perceiving the world get dismissed, ignored, or told that how they feel is wrong simply because they are self-defining their own feelings and it doesn’t go along with so-called societal expectations on how feelings are “supposed to be” felt, expressed, and/or demonstrated?

There is no wrong way to experience feelings.

How you react when you are experiencing those feelings could potentially be problematic, however, especially if you hurt yourself or hurt someone else, but your feelings are never wrong.

Feelings and emotional states are often used interchangeably, but there are distinct differences.  For more information about this see What’s The Difference Between Feelings and Emotions?.

In his blog Are Feelings Good? Are Feelings Bad? Lawrence E. Kincade, PH.D., LCSW states “To put it clearly:  they are neither.  That’s right, feelings – any feeling and all feelings – are neither good nor bad.  They are neither blameworthy nor deserving of praise.  They are neither immoral nor virtuous.  They are not right.  They are not wrong.  They just are.  That’s the first thing to know about feelings.  Feelings just come to you on their own.  To say to yourself, “I shouldn’t have this feeling of anger!” makes as much sense as saying to yourself, “I shouldn’t have these brown eyes.”  In both cases, you have no choice.”

My feelings are my own and I have no choice in how I experience them. They are neither right nor are they wrong. They just are. How I experience happiness isn’t wrong, either.  It just is.  Just because my way of experiencing happiness is not the same as another doesn’t mean I don’t experience happiness.

During the aforementioned conversation, it was determined that the definition of what “happiness” is happened to be different for the other person when compared to mine. This person couldn’t see my happiness, because it did not fit their definition of what they thought happiness is supposed to be.

Based on their definition, I would never be happy, because it involved being content and at peace in your environment. As an autistic person, the world hurts. Everything is too bright, too loud, too rough, too fast or not fast enough. Smells are too strong, food has to be a certain way, socks have to be straight, and no tags on clothes!

People behave in ways that don’t make any sense, yet I am expected to behave like they do, and why the heck is there so much importance placed on small talk?  Just let me get my job done without the pressure to respond to something that has nothing to do with the task at hand.  Also, why do people feel they have to kiss up to people? Laugh a fake laugh at things that aren’t funny?  Why are people so vague?  Say what you mean and mean what you say!  How hard is that?  Apparently, harder than I think, because people want you to look between the lines and figure out meaning.  When their body language doesn’t match their words it gets very confusing, but they get mad at you because you misinterpret their confusing coded language.

How can anyone be content and at peace when your environment is like what is described above? What is described also doesn’t include problems that are only exasperated by additional health problems and co-existing conditions. When the world is not designed for you, just living becomes a challenge.  I long for the day when I can live my life and not just survive, struggling each and every day just to make it to the next sunrise and then do it all over again. It is exhausting.

This all came to mind when I was confronted with the realization that this person whom I had spent almost half my life with didn’t know what made me happy. I began to think about all the other people in my life.  Do they feel the same way?  Do they really not know me, because their definition of (fill-in-the-blank) was different from mine?  Was this why I have been referred to as a robot, selfish, stuck-up, cold-hearted, and unfeeling when it has always been the complete opposite?

I am 41 years old and I have never understood how so many people in my life have never really seen me. They see what they want to see, which isn’t always correct. There is a box and I am expected to fit in that box.  If I don’t fit in whatever that box is, then I get the negative labels or I am ignored, dismissed, or never really known at all, which seems to be happening more over the years.

I was diagnosed when I was 36 years old. This diagnosis happened after both my children were diagnosed.  My diagnosis was liberating for me.  I finally understood that I wasn’t broken.  I learned my neurology was different which meant I needed to unlearn some things and relearn other things.  I had to learn how to cope in a world that isn’t designed for me. I had to learn how to advocate, because I was never taught how to.  I had to learn that it was okay to say “no”, something that had been denied me all my life.  One of the most important things I learned was to have pride in myself.  Yes, I am a disabled person. Yes, I struggle, but I like who I am. I have worth.  I have skill.  I am human, I have feelings, and I matter.

Here is a song that I felt fit what was going on in my head during this time – How Soon Is Now (Lyrics On Screen) ~ by Love Spit Love (Cover), The Smiths (Original Version)

Unfortunately, many people in my life didn’t want to see me in any other way then what was in the preconceived box that they had been trying to shove me into all my life. I never fit in that box and I only got damaged by their attempts to make me fit.  These people I am referring to couldn’t understand why I had spread my wings and fought to escape that box. 

I had to grieve the loss of a life I thought I had and work to accept who I really was as a person. I never grieved when my children were diagnosed.  I never felt I lost anything.  They were still the same amazing people they had always been. We just had an answer now so they wouldn’t have to go through what I did.  I was a different matter, though.  I had 36 years of brainwashing and compliance training to overcome.   People in my life couldn’t accept this grieving from me.  To them, I apparently was supposed to still “pretend” to be who they expected me to me.  They still couldn’t see me, the real me.  I don’t know if they just couldn’t or wouldn’t see the person that I had always been.  All I do know is that I was on my own and I was determined to make it through.

Here we are, five years later. So much as changed since I was diagnosed, so much upheaval, so much pain, so much loss, but also a chance for redemption and second chances.  I am not the same person that I was when I embarked on this journey five years ago.  I am stronger now.  I learned about boundaries and have established firm ones.  When someone who I love very much told me that they didn’t know what made me happy, I had to figure out what the heck was going on and not just let it get ignored.   

 As much as I was dumbfounded by this revelation, I also felt a sense of gratefulness that this person was being so honest with me. Honor, integrity, and accountability are very important virtues to me and this person has a history of lying by omission and being passive aggressive towards me.  This time this person chose honesty over hiding things from me.

I honored this honesty by providing my own.

So, what makes me happy?

In 1998, I met a person on the door step of my sister’s apartment. I felt I had known this person all my life.  This had never happened to me before and has not happened since.  I felt safe with this person.  I could wrap myself in his arms and the world would disappear.  That painful overwhelming world would just melt away and all there was left was his warmth, his scent, the rise and fall of his breath, and the beat of his heart. For the first time in my life I could say I was really happy and content.  It has remained that way even when all the problems arose and he chose to leave instead of facing his inner demons.

He came home, though, after three years, and it made all the difference. Once again, I am safe in his arms. Once again, we are a family.

Even after all this time he is still learning who I am, but at least he is willing to do that now. In the past, he was one of the ones who wanted me to fit in a preconceived box of expectations. Now he is helping me spread my wings and we are facing this world together.

I love you, honey. Thank you for being who you are.  

Rescuing Myself from Unrelenting Frustration

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

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

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

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

How do I explain this? Where do I start?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ah, to feel comfortable . . .

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

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

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

Rescue yourself

Thoughts About Diagnosis, Therapy, and Early Intervention

(Trigger Warning: ABA Reference)

Both my kids were diagnosed with Autism when they were both already in elementary school. The school had nothing to do with it. I went to a private psychologist for the evaluations. I actually had to convince the school that both were autistic. To them, an autistic boy was someone who threw chairs and did not understand puns.

The school wouldn’t believe me when I showed either of my children’s evaluations. My son is a textbook autistic child, has been that way since day one, but he internalizes his stress and shuts down rather than explodes. He also loves puns.

Mytumblr_inline_nobw3kbKgp1rxc9ln_540 daughter is also a textbook autistic child, but she is a girl who is quiet at school and tries her best to hide and go unnoticed. She internalizes everything, then when she is in a safe place, like home, she explodes. 

Here is a post I wrote addressing stereotypes and misconceptions about autistic children – Stereotypes and Misconceptions – There is more to the Story.

My son was seven years old when he was diagnosed. He was the first of us to be diagnosed only because he was in counseling for depression and the counselor noticed he wasn’t making eye contact. My daughter was ten years old when she was diagnosed and was diagnosed with Bipolar two years prior. I was diagnosed after both my children were at the age of 36. That was almost five years ago.

People have asked me why my children were diagnosed so late, since kids are now diagnosed as preschoolers and sometimes even younger. I tell them that I saw nothing out of the ordinary with them. They were like me and I hadn’t been diagnosed yet. You can read more about that here – How I Found Out I Was An Aspergirl.

Here is a reflection I wrote after the one year anniversary of being officially diagnosed – Life as an Aspergirl – Reflection.

Lots has changed since I made my reflection post, lots of detours, redirection, and starting overs, but that is a story for another time. 

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Both my children have been in counseling for mental health issues since they were very young. Counseling also served to teach them coping skills once the determination of Autism was made. They needed help in learning how to navigate in a world that is not designed for them. They also needed help dealing with depression and debilitating anxiety.

I never once put them in ABA (Applied Behavioral Analysis). I wouldn’t put them in ABA even if I had known about their Autism earlier. ABA is torture, pure and simple. Many adults have come out stating the abuse they suffered, many developing PTSD due to their experiences with ABA as children. I never went through ABA myself, but I observed through a two way mirror a three hour period of time of two boys being subjected to ABA. You can read about that experience here – Intial Reaction to ABA.

I am a teacher. I understand the importance of early intervention. I wish I had known early on that I am Autistic. I might have been spared much of my struggles over the years had I known. I didn’t get the luxury of an early diagnosis and early intervention, yet I made it through.

I want people to understand that there is no magic window that everything has to be accomplished during a specific time when a child is growing and developing. Hope is not lost when this supposed magic window closes. I know this from personal experience as a teacher, as a parent and as an actual autistic person who wasn’t diagnosed until adulthood. I had to relearn some skills and over come other unhealthy ones that I had developed on my own as I tried to survive in a world I didn’t understand. The point is, you have time and all children develop when they are ready and at their own pace.

Yes, a majority reach their milestones about the same time, but just like all pregnancies are different, all children are different. My son has dysgraphia, something that wasn’t diagnosed until he was in sixth grade. I once had my son’s first preschool teacher tell me that if he didn’t figure out how to hold a pencil correctly by four years old, he never will. That claim she made was complete bull.

I had many, many kindergartners come into my science classroom over the years that had never held a pencil, or used scissors, or even knew their colors, numbers, or letters. Guess what? They all learned how to hold a pencil by the end of the school year.

Both my children struggle with holding pencils. Both have dygraphia that was diagnosed when they were older. They both use those fat kindergarten pencils as an accommodation, a pencil that they both can hold correctly. If that preschool teacher of my son’s had bothered to try to have him use a kindergarten pencil or put a thicker finger holder on a regular sized pencil, he wouldn’t have struggled so much with holding a pencil in the first place, but I digress.

KeychainAs I have stated, both my children have been in counseling for some time. My daughter is now 15 years old and my son is 13 years old. I live in Washington State. Here, when a child turns 13 that child has the right to decline treatment unless it is inpatient care. At 13 years old, children in this state sign their own release forms.

My children can legally refuse to go to counseling, but they don’t. They actually ask to go, because they were never forced, they were never pushed into compliance training (ABA), and they were always told why they were being asked to attend counseling sessions.  They had buy-in into the treatment they were receiving, and it made a huge difference in how affective the type of treatment they were receiving was. 

My daughter had OT (Occupational Therapy) at four years old. She has always wanted to go back, but we were living where we didn’t have access to a private OT and the school wouldn’t qualify her for OT services. OT is available where we live now and my daughter is once again back in OT by choice. I feel my son would really benefit from OT, but it is up to him. The OT therapist is going to allow my son to observe during his sister’s OT sessions to help him feel more comfortable. If he decides to give OT a try, then great! If not, then I will respect his decision. It is his body and he has the right to decide what happens to it. 

I understand that there is a problem with giving very young children a say about the type of therapy they receive, but my son was six years old when we started talking to him about counseling. He was depressed. He knew something was wrong even if he didn’t know the word “depression”. He was tired of being sad and angry all the time. He wanted help. My daughter was eight years old and she didn’t like how she felt with all her ups and downs. She also felt so guilty after her rages. She wanted help.

Kids can understand a lot more than many adults give them credit for. Sit down and talk to them. Even non-speaking autistic children communicate and understand a lot more than it might appear. Let them have some sort of say in what happens to them and let them express their concerns.

Here is a useful link for healthy interventions – 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm.

autism-tshirt-1If you have to fight to get them to therapy, something is wrong. If they fight with the therapist, something is wrong. If they are quiet and subdued during therapy, but loud and talkative at home, something is wrong. If they crumble into shutdown or meltdown after therapy, something is wrong.

That “wrong” thing could be incompatibility with the therapist, ineffective therapy strategies, unsafe sensory environment, abusive techniques, or a missing diagnosis. My children have been evaluated twice and discovered additional conditions each time. It now looks like my daughter will have to be evaluated a third time soon due to questions regarding her co-existing conditions. My daughter was born autistic, but her Autism was overlooked by the so-called “experts” for years for various reasons.

For more information regarding those various reasons, click here. There is a link to an additional article by Tania A. Marshall embedded in the title. 

Also, not all conditions show up early on. Learning disabilities, such as dyslexia, can be hard to diagnose early on. My daughter was nearly 13 years old before she was officially diagnosed even though it had been suspected since she was eight.

Unfortunately, life can be hard and traumatic, especially when adults do stupid things without regard to children in their care. My son developed PTSD and agoraphobia at 11 years old due to irresponsible choices an important adult in his life made. Mental illnesses can show up later. Personality disorders can’t be diagnosed until the child is much older, closer to 18 years old. This is what we are facing with my daughter right now. 

Neurological evaluations are expensive, so trust your gut and do the research. Learn what traits are actually autistic traits. Don’t just assume or excuse certain challenging behaviors as autistic. These challenging behaviors could be an untreated co-existing condition.

Listen to people who have these diagnoses. They are the true experts. If you feel something is not right or is missing, then you are probably right. Don’t just take the so-called “experts” advice or conclusions. My children and I have been on this journey for a long time. You have to keep moving forward, don’t give up, and find what works without causing trauma.

The story of my son’s anthem – Keep Moving Forward – Move Along.

A poem by my daughter – “The Sun and the Moon” – Expressions of PosAutivity: #AutismPositivity2014.

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(Image found at naruhinaph.tumblr.com)

**I do not own any image used in this post. Unless cited, all credits are linked with each image.