Tag Archives: life

“Telling Your Story with a Purpose”

It has been awhile since I wrote. I am a single mom working three jobs and home schooling my two children at the same time.  I have just been a wee bit busy lately.  Now that the end of school rush is over and summer break is upon us, I am down to working one job and teaching only one home school summer course. This leaves me with enough time and energy to devote to writing again.   

I started writing a blog on Tumblr back in September 2012. I was just beginning to find my “voice” back then and was encouraged by a fellow teacher and parent to start writing in a more public venue. It took a lot of encouragement by my friend, but eventually Geeky Science Mom’s Tumblr was born.  I didn’t really have a focus of the blog in the beginning. 

At that time a Tumblr blogger still needed to know the codes in order to properly format their blogs. I was learning and experimenting and reaching out to people in cyberspace to see how I could help. My Tumblr may have started as a cat, fandom, art, science, parent, and autism information page, but my blogs eventually became longer and longer.  My writing became more focused as well.

I was diagnosed in December 2011 at the age of 36 after both my children were diagnosed. Here we are five and a half years later. During that time I have completed a Master’s degree that started out with a focus in Science Education and ended with a focus in Autism Education.  We moved across the state to start a new life where my children could have access to better opportunities.  My marriage fell apart shortly after.  My ex-husband came back three years later, but it didn’t work out due to his abusive nature.  

For more information about my experience with emotional abuse and how to deal with it:

Invisible Scars – A Tale of Emotional Abuse  (June 9, 2014)

Dealing With Emotional Abuse in Families (May 5, 2016)

So many things have happened in my life in what feels like such a short time. I just turned 42 a couple of weeks ago. I never ever thought that I would be a single mom with two teenagers, homeschooling, and working three jobs just to make ends meet.  I have been a teacher for 19 years. We are on Medicaid, because I am not eligible for medical insurance through my employers due to my part-time standing. We are on food assistance.  My daughter is on SSDI (Social Security Disability Insurance).  We live in a rural community.  The three of us live in a very small two bedroom apartment.  Part of the living room is partitioned off so my son can have a bedroom.  Everything we own is old.  We can’t even afford the luxury of television services, but we have a Wii player that was a Christmas gift that we play Netflix through.

The Aspie Teacher blog was created to tell the story of my family’s journey, but I tell the story through my perspective.  When I tell my story I am coming from a lot of different angles that I have personally experienced.  I don’t just share my story to complain.  Yes, I have experienced a lot of heartache in my life, but the purpose of my blog is not to just complain about the hardships I have experienced. 

I have a personal philosophy. To me, helping one person at a time is worth all the effort I put into my work.  If I can help make one person not feel alone, help one person make their life better, then it is all worth it. I believe in the idea of paying it forward.  I help one person, then that person will go help another, and so on and so forth.

I had a friend help me find my “voice” after a life time of feeling ignored, dismissed, and squashed into a box that I didn’t fit in. I have spent a life time of having to deal with things on my own, crisis after crisis and feeling abandoned and not understood when I reached out for help.

“What I remember most about emotional abuse is that it’s like being put in a box. How you end up in there is the biggest trick – I never managed to work that one out. Maybe you think it’s a treasure box at first: you’re in there because you’re special.

Soon the box starts to shrink. Every time you touch the edges there is an “argument”. So you try to make yourself fit. You curl up, become smaller, quieter, remove the excessive, offensive parts of your personality – you begin to notice lots of these. You eliminate people and interests, change your behaviour. But still the box gets smaller.

You think it’s your fault. The terrible, unforgivable too-muchness of you is to blame. You don’t realise that the box is shrinking, or who is making it smaller. You don’t yet understand that you will never, ever be tiny enough to fit, or silent enough to avoid a row.”

It’s time to make emotional abuse a crime – Lauren Laverne  (via trashysnacks)(via gularasi)

I don’t want others to have to go through what I did. I want to help them find their “voice”.  I want them to feel safe to tell their story if they want to.  I want others to feel that they are being heard and understood, but this requires that the writing have a purpose so you can grab the audience that the writing is intended for.

How does one tell their story with a purpose?

Recently I went to a training that was entitled “Telling Your Story with a Purpose”. A lot of good advice was provided and what was shared reminded how I struggled over the years with disclosing about my disability, my PTSD, and how much should I disclose about my family and personal experiences.  It took me eleven years to finally be able to share all the parts of my medical trauma publicly in one place, which you can find here –The Volcano is Awake.

When I finally was able to publicly share my medical trauma that led to my diagnosis of PTSD, it was such a release. It was finally out there.  Once it was out there I was able to make some very important decisions about my life.  Establishing and maintaining healthy boundaries were absolutely necessary if I was going to be able to make any further progress in my recovery.  The story that first started The Aspie Teacher blog was to jump-start a necessary step in my recovery, but also to let others know about autistic burnout and about trauma bonds. The purpose of my story was not only about helping me. It was to help others as well.   

Telling your story doesn’t have to be in the form of a blog. It could be in poetry, or song, or dance, or in a painting or drawing.  The list goes on.  In June of 2016, my son was finishing up a unit on poetry.  The final assignment was to write two poems in the form of his choice.  He worked very hard on metaphor usage.  His poems told stories and you can find those stories here – An Awakening.

It takes a lot of time and a lot of courage to come out and tell your story. It is not an easy thing to do and it is not for everyone.  Finding your “voice” is also a challenge, but social media platforms are making it easier for people to find a way to express their “voice” and reach out to others who will hear them and connect with the story. 

I follow the three C’s – You have to make a Choice to take a Chance or nothing will ever Change. I made a choice to take a chance with telling my story and things changed for me.  I began to feel more empowered and more sure of myself and my abilities.  Finding my “voice” changed my world for the better. 

Here is a video that I thought fit with the message of this blog – One Small Voice | ASL | Educational Songs | Kids Videos | YouTube for Kids | Jack Hartmann

Here are the lyrics to “One Small Voice”

With just one small voice
Singing out a song
With just one small voice
Singing sweet and strong
One by one they’ll grow
And together sing along
And then soon all the world
Will be singing

With just one small voice
Singing out a song
With just one small voice
Singing sweet and strong
One by one they’ll grow
And together sing along
And then soon all the world
Will be singing

The following lists were put together by the Seattle Children’s Hospital – Center for Children With Special Needs and the Washington State Department of Health

Things to Think About When Telling Your Story in Public

  1. You have some distance and perspective on your experience vs. being in the midst of it or still actively working through it.
  2. The story has benefit for others. It’s not about your personal agenda, frustration, or current issue.
  3. You feel ready to share it. Trust your instincts. Share parts of the experience that you are ready for now – you don’t need to tell it all.
  4. You are relatively comfortable talking about your experience. It’s not at your expense – you don’t feel overly vulnerable, exposed or shamed.

Guidelines for Self-Disclosure When Presenting

  1. Stay with the focus of your message – less is usually more.
  2. Protect the privacy of others.

**Remember – When it is put online, it is online forever. Privacy of others must be protected.

Closing Doors . . .

What do you think of when you hear the word “commitment”? What about the phrase ‘being committed to something or someone”?  What comes to mind then? I have found that the images are different depending on the individual.  Please realize that deeply caring about someone is not the same as being committed to them.  I was reminded of this when a certain person in my life decided to tell me he was committed to me; it was just a different kind of commitment according to him. Then later on he proceeded to tell me that he deeply cares about me and wants to be in a relationship, but he is not committed to me.  Confused yet?

I have been dealing with this same person for nearly 20 years. This is the type of confusion that he continuously created when ever commitment came into question.  At first he says the right words and acts like he really means what he says, but after he gets what he wants, his effort is finished and the sabotaging begins.  This is what someone who has commitment phobia does.  They want a relationship, but they also want space and freedom.  They can be loving, attentive, and very charming, but at the same time passive aggressive and emotionally neglectful.  Their sabotaging begins subtly, but then gets worse and worse over time.  They are not proud of their behavior and actually feel guilty, but it doesn’t stop them.  They are governed by fear, lots of fear. 

A phobia is an extreme or irrational fear of or aversion to something. Commitment phobia is a very difficult thing to deal with, especially when you are the one on the receiving end of the behavior.  In my case, for 15 years this person tried to hide their phobia and denied their depression and problematic personality features.  The problem with this is that it all will eventually bite you in the ass in a very big way.

Our family was torn apart by the action of this person. It has been four and a half years since the big bite happened and he subsequently left us.  He came back after three years after a psychological evaluation and had started counseling.  He stopped his counseling shortly after returning home and for the past year and a half we have been slowing rebuilding our family unit, but unresolved issues arose.

I haven’t really written in the past month, because certain revelations have been happening and I needed time to process it all. Slowly I have been trying to chip away at all the layers in an attempt to deal with these unresolved issues.  Talking ensued, lots of talking. What was finally revealed lead me to one conclusion – he has commitment phobia. 

How does one even develop something like that? To answer that question, you would have to divulge into why any phobia developments and the reasons really depend on the person.  In this particular case, I can honestly say that this person had a lot of baggage prior to meeting me.  Our various problems that we faced as a married couple just added to the mix of things he really didn’t want to deal with.

This whole idea of commitment phobia is something that I am having trouble wrapping my head around. I am a very committed person, always have been.  I am also a very loyal person, almost to a fault, which has led to me being taken advantage of.  I don’t know if these aspects of me are derived from being autistic or if they are simply aspects of who I am regardless of anything else.

In The Discovery of “Aspie” Criteria by Attwood and Gray, under “A qualitative advantage in social interaction, as manifested by a majority of the following”, number one states “peer relationships characterized by absolute loyalty and impeccable dependability”. Yup, that is me.

I am a loyal, dependable, and committed person. I am known as someone who doesn’t give up and am always looking for solutions and new paths to follow when I encounter a road block of some sort.  I am also someone who establishes strong bonds with people and have been known to be overly trusting way too many times.  Keep in mind that not every autistic person is overly trusting, but I am one of them that is.  I am also naïve even after being on this planet for 41 years.  Perhaps this is due to me being developmentally delayed, but I can’t say for certain.

Rules are rules to me and that includes rules in a relationship. You don’t cheat, you don’t play mind games, you are honest and open, and you are there for each other. This allows for trust to build.  Trust must be earned.  It took me so long to learn that.  I give way to many chances when it comes to people.  I don’t know why I do this, but after being hurt so many times I finally took it upon myself to learn about the importance of personal boundaries.

I was never taught about boundaries growing up. I also was never taught how to say “no”.  I was taught to comply.  Perhaps that plays into why I give too many chances, but I can’t say for sure.

I have been told in the past that I am too kind, that my heart is too big, and that I must have a lot of patience. I have been told that these aspects of me allows people to take advantage of me, to take advantage of my heart, which only leads to the heartache that I have experienced many times.

I married a guy who is basically a douche, but tried to hide that fact, because he really did and still does love me. The thing is, apparently love is not enough to keep someone from being unfaithful, being neglectful, and emotionally abusive. This is why all these years I have been so confused and so hurt.  Why would you tell someone you love them over and over again, tell them you want to marry them, make future plans with them, have children with them, spend nearly 20 years with them, and then systematically destroy it all?  It boggles my mind.

For four and a half years I have been hanging on unable to move beyond the shattered remains of my life I once had. For a moment I thought I was getting it back.  Everything felt so right.  We were a family again, but it was short lived.  The man I bonded to can’t commit.  All those hurtful things he did happened because he couldn’t commit and the lie he had been living finally caught up with him.  Instead of being honest with me, he used emotionally abuvise tactics to destroy our marriage so he didn’t have to be the one who initiated the divorce proceedings.  Something I had to do. 

Here we are again. He didn’t want to look like the bad guy, so he has been sabotaging repair efforts and I don’t know how much of his behavior he is even aware of.  Ingrained behavior is difficult for a person who is demonstrating the behavior to actually see that they are doing it. Denial is something he is very good at.

About three weeks ago I felt something emotionally close in my heart. At that time I learned that my ex-husband wants the benefits of the family he loves, but not the responsibility and commitment that comes with it. As these revelations were coming out, my ex-husband also started talking about not wanting to look like the bad guy by ending our relationship a second time.  Go ahead, if you haven’t already, start shaking your head at me and make disapproving expressions.  I know, I know. Déjà vu all over again except without the infidelity and abandonment parts. 

I have taken these last few weeks to process this feeling of something closing in my heart and trying to figure out what this sensation was about.  I have come to the conclusion that it was a door closing, so to speak.  This feeling was something new to me and I have had difficulties determining what it meant. 

For four and a half years I have been unable to move on. Too much hurt, too much anger, and too many unanswered questions.  I think that feeling of a door closing in my heart means I am ready to take those first steps onto a new path.  It still hurts, but the pain is different this time.  I have found that I have too much self-respect to continue on this roller coaster of a life that my ex-husband lives in. My children and I have had to lower our expectations to such a low point so we can be pleasantly surprised when he does a nice thing or he does what he said he was going to do.  It is ridiculous that we have to do this, but we have to take care of ourselves.  There was just too much disappointment and hurt that was happening.

My ex-husband was given a second chance to make things right. Instead of working with me to find middle ground and nurture our relationship and our family, he has chosen to dig himself in and not budge.  Working towards middle ground means commitment and that is something he is just unable to do.

I don’t regret giving my ex-husband a second chance. I had to find out.  I had to take the chance.  I needed questions answered and I needed to know if we could really be a family again.  I got my answers. The result was not what I expected or wanted, but I got what I needed.  I got what I needed in order to finally move on with my life.  As the Rolling Stones song goes:

You can’t always get what you want

But if you try sometimes well you might find

You get what you need

The Rolling Stones – You Can’t Always Get What You Want – Lyrics

In closing, I raise a glass of your preferred beverage to what the future may bring. May it be a bright future indeed.   Blessed Be.

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.

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.  

Reaching for More, but also Striving for Balance

Here I am sitting in my tent with my cats, my kids, and my dog. Yes, we are camping with three cats.  Why do you ask?  Because we are in the process of building a house, but my lease ended before our future house was far enough along for us to move into.  So, here we are in our little tent city looking at the skeleton of our future residence.  The outer walls are all up, the frames for the inner walls are up, and today it looks like the last parts of the frame for the roof was put up.  We figure we will be occupying our little tent city for about a month and a half or so. 

Fortunately, we do have access to running water.  We are building our house on one half of my in-laws’ property.  They own 160 acres and we have inherited 80 of those acres, the half without the house, barn, and shop.  The running water is at my in-laws’ house, which is on the other half of the property, just a short jaunt from our building site/camp site. 

The house we are building was designed by my 15 year old daughter. When finished, it will be 48’ X 24’ single level home with three bedrooms, one and a half baths, opened floor plan with no hallways or stairs. My daughter designed it so we will have a long roof beam that will be exposed where she can have a hammock swing attached in between the kitchen and living room area. 

It has been amazing to be part of this project. We are building the house ourselves along with friends and family members.  The wood for the lumber is coming right off the land.  Our family friend has an old mill (that used to belong to my in-laws) on his property where he can turn logs into usable lumber for building.  His property is just down the hill from us, so it is relatively easy to transport the logs down to the mill, then back up to the building site.

These last three weeks have been particularly difficult for my family. Everything had to go into storage.  We had to do things in stages to allow my children time to adjust to the differences in the house, but as time clicked by, we had to quicken our pace.  I started packing two months ago, so our living room became filled with boxes of all sizes.  Over these last few weeks all the boxes and furniture began to be moved to storage.  The faster we went and the more things began to “disappear” from the house, the higher the anxiety and agitation for all of us.  This was the third move my children have had to endure.  The first one occurred when they were very little, the second occurred four years ago and it was a move they wanted.  The school district there was not a good place for them.  This third move has been both difficult and rewarding. 

About four years ago, two months after the second move, our family was ripped apart. My husband’s life long mental health challenges overwhelmed him and he began to self-destruct.  These were challenges that he was never willing to attend to and it all caught up with him.  Unfortunately, he took our family along with him on his path to self-destruction.  Instead of getting help, my husband ran.  He left us with a gaping hole where he used to be and with many unanswered questions.  Three years later, my husband came home.  He had finally decided that he wanted help and had begun to see a counselor.  He discovered that what he really wanted was his wife and children, not the life of a bachelor free of family responsibility.

That was almost eight months ago and we have been rebuilding our family structure ever since. This house building project is part of that rebuilding of our family.  We were living an hour south of where we are building.  Today, July 25th, I turned in my keys to our rental and said goodbye to a place I thought I would never be able to leave due to being a single mom with limited income.  I fought to keep my own place.  I had been told to leave by family members and move into a camper trailer on their property with the kids living in their house.  I was told I wasn’t competent enough to raise my children on my own. 

I was expected to put my tail between my legs and give up and let another family member care for my children.  I refused.  I was determined to prove to my family and to myself that I could do this.  I was not going to give up.  I had to hold on.  I knew I was more capable than what they thought.  I may be a disabled Autistic adult with multiple invisible disabilities, but I am NOT incompetent. I just needed to be given time.  Time to grieve, to find my place, time to do what I needed to do in the way I needed to do it. 

You know what happened? I did do it.  I worked three part-time teaching jobs, completed my Master’s degree (which I had started just before my husband left), homeschooled both my children these past two years (and will continue to do so), made sure my children made it to all their counseling/doctor appointments, helped my children through their grief, maintained a house and a vehicle, cared for all my pets, and still participated in advocacy work. 

I don’t advise anyone to do it what I did. This was personal to me. It was stubborn resilience and determination on my part.  I had to make it work, but it was at a high cost.  I have been in a perpetual state of burnout for years, not really living my life, but instead just surviving.  There have been many days that I can’t even get out of bed.  Grieving is different for everyone.  How one deals with grief depends on the person.  One of the worst things you can do to a grieving person is to tell them to get over it, to let it go, and move on.   I was told that many times by the same person who expected me to just give up.  If I had given up, my family wouldn’t be where we are now, together for the long haul.        

I would never have imagined four years ago when all hell broke loose that we would be here today building a house together. My life has definitely taken quite a few detours and hit A LOT of bumps along the way.  It is not how I had necessarily planned it to be, but, as the saying goes, life happens when you are making other plans. After 18 years of being a classroom teacher, I have decided to become self-employed.  Another aspect of myself I thought I would never be able to do, starting my own business as an education consultant and tutor. Not only has my family become a four legged entity again, but my housing and employment situation has also changed.

So much change in such a short time. Change can be very painful, but also rewarding.  Change is one of those strange concepts that can make you feel that your life is ending, and essentially it is, at least the life as you knew it before the change.  I think that is why change hurts so much.  A life is ending, a life you have become accustomed to and are comfortable with.  Then along comes a change and disrupts everything you knew.  Life can never be the same after that.

chang(Image found at http://uniqueviral.com/quotes-about-change/)

The universe is a dynamic place. Always shifting and changing, but also striving for equilibrium.  The universe wants to find balance out of chaos.  Change brings chaos, but time brings balance. 

It is always important to give yourself and those around you enough time to so what they need to do.  As much as it pained me to do so, I had to give my husband the time and space he needed to figure out what he really wanted and then decide on his own what he needed to do in order to achieve that wanted situation.  It was a difficult road to travel on. It took a long time and it could have gone either way. Luckily, he chose to get help and was able to come home. 

As for me, I am developmentally delayed, but not developmentally stopped.  I have been continually growing as a person, abet slower than my peers.  I especially grew as a person after I was diagnosed. Being diagnosed as an adult, I had to be allowed the time to process the anger of being ignored and silenced for most of my life.  I had to allow myself the time to grieve the loss of who I thought I was and adjust to who I had always been, a dynamic person who is full of passion, but had been stifled and silenced most of my life.

I had been taught that I had to conform to other people’s expectations of how they wanted me to be instead of being accepted for how I really was.  What I needed didn’t matter.  My voice was silenced and my needs were made secondary to everyone else’s. I was conditioned to became a codependent which isn’t healthy.  I had to gain enough confidence in myself to allow that fire within me to burst forth. When it finally did there was instability at first.  It took time to find that needed equilibrium. 

My husband could not accept me after my diagnosis. The change of his perception of me that was caused by my diagnosis was too great for him.  He thought he had wanted me to be a certain way and I was never that way and I couldn’t be that way no matter how hard I tried. He had to lose me in order to realize that what he had always wanted had been there all along, he just couldn’t or wouldn’t see it.  He also had not given me enough time to process through all the changes that my diagnosis had created within myself. 

I hear many people grieve after their children are diagnosed. That didn’t happen to me.  I never grieved after both my children were diagnosed.  I never felt that I had to.  They were the same two amazing children that they were prior to their diagnoses. Nothing changed for me in that regard. However, I did grieve for myself after my own diagnosis.  The change brought on by the diagnosis was both positive and negative for me.

It felt like a burden had been lifted off my shoulders, a sort of redemption in a way. I finally had the proof that I wasn’t broken after living a life time of feeling like I was.  There was also this sense of loss, a life that could have been if I had been able to get my diagnosis sooner.  Then the “could-haves” started up. Maybe I could have had an easier time growing up if I had access to social skills training and an educational setting that was more conducive to my needs.  Maybe I could have been more comfortable in my own skin if I had known that I needed to let myself stim and not hold myself so ridged all the time.  Maybe I could have been spared so much confusion growing up.  Maybe I could have been seen for who I really am instead of how everyone wanted me to be.

I had to allow myself to process through all of this, and it took time, much to my family’s dismay. I am slow to adapt to change. Change brings grief and grieving for me takes a very long time, especially with all the layers of trauma that I have built up throughout my life.  This is something my family still struggles to understand.  Luckily, my husband is now wanting see me, the real me, after being together for nearly two decades.                           

Now here we are, all four of us living in tents with our future house becoming more of a reality every day. We have a kitchen tent and my husband and I have our own tent with the cats and the dog.  Both my children have their own tents and my son’s birds stay with him.  I forgot to mention that we are also camping with two parakeets.  Our two goldfish are happily swimming in their tank up at my in-laws’ house.

Change hurts. Transitions are hard.  Everything takes time and everyone operates at different speeds.  People need to be given the time they need to reach equilibrium.  My family is on a journey to reach our equilibrium.  We are not there yet, but we are getting closer every day.  I highly suspect that there is still going to be ripples, stretches, and possibly some cracks in the equilibrium even after we reach some resemblance of it.  Life is funny that way.  It always seems to keep us on our toes reaching for more, but also striving for balance at the same time.