Tag Archives: life

A Productive Rant

Privilege, Societal Barriers, the Roll of the Genetic Dice, and the Choices We Make in Life

Rolling Dice

There are days that I find myself wanting to claw at the walls and people’s faces. Some days I feel like I am suffocating, being smothered by everything. Other days I am so fatigued that I find it hard to breath. I feel that I have to fight my muscles just to keep breathing. It is not one thing that is causing this. It is never one thing.

I realize some people would view this as me whining, that I should just be content that I even have a job at all and that I have a roof over my head. I even think I am whining. Don’t get me wrong, I am very grateful, but there comes a time when there is just too much that has been going on for too long.

Why do my kids and I continually struggle when others don’t? It really has to do with privilege, societal barriers, the roll of the genetic dice, and the choices we make in life

I chose to marry a man that turned out to be emotionally abusive and then abruptly abandoned us.  Did I know he was going to become abusive? No, not in any way.  Everyone liked him. I felt I had known him all my life. The choices he has made has caused a lifelong impact on myself and our children.   

I chose to go to college and become a teacher, something I wanted to become since I was seven years old.  I was born to be a teacher. Unfortunately, the society that I live in does not really look kindly upon teachers or schools for that matter. Lots of negativity, lack of resources, and lack of support.  

Then I chose to go back to graduate school to get my master’s degree, because I had essentially become a dinosaur in my field. I was a long-term science teacher with only a bachelor’s degree.  I needed to make myself more hirable so I could support my children better. That was my thought and when I started my master’s program, we were still a two income household. I knew that, in order to complete my original plan of completing a science education graduate program, I would need the assistance of my husband. He agreed that it was time for me to go back to school and that he would be there to help me.

Our Education System

It wasn’t even two months after I began my program when my husband left. I managed for two years without his help, but due to my learning needs, it became clear that I wasn’t going to be able to finish the program. I was attending an online graduate program from a different state.  The school would only help me if I went to the disability office on campus.  That was going to be impossible, so I decided to transfer to another school. Again, another choice on my part that was due to being put into a position that was not my choice.

I managed to find and get accepted into a different online graduate program from a different state, one that believed in Universal Design for Learning (UDL) standards and supported all students in many different formats. I graduated two years later with a Master’s in Education with a focus in Autism. 

In order to complete my degree, I chose to amass student loan debt, because, in the country I live in, college is very, very expensive.  I do not have the privilege of coming from a well-to-do family that could pay for my college education. I either needed to take out student loans or not get my graduate degree.  Neither my degrees guaranteed me a well-paying job with benefits. There are no guarantees in life. 

I also chose to become a mother, twice.  Did I know that I would have complications? No, there were no indications.  Two months of bed rest with my first child (pre-eclampsia) and four months of bed rest with my second child.  There was no warning that all hell would break loose with my second pregnancy. I was almost paralyzed. I have a beautiful son and a beautiful daughter, but my body never fully recovered after my second pregnancy. I have ongoing medical problems stemming from pregnancy complications and Ehler-Danlos Syndrome. 

I am autistic, I have Ehler-Danlos Syndrome, and I also can’t build up antibodies from vaccines. This is all due to the roll of the genetic dice.  My titer levels show no evidence that I was ever vaccinated even though I received vaccinations multiple times, even in adulthood. So, yay for me.

As a person who must rely on herd immunity to protect myself from preventable diseases, I have no patience for anyone who is an antivaxer or anyone who claims vaccines caused their child’s autism. No patience what so ever.  There is a current measles outbreak happening in my state right now.  I am appalled by the self-righteous ignorance of people. They don’t care and they think they know better.

I am digressing . . .

We moved four times in the last six years. We moved due to financial, family, work, and school reasons. Was all this moving by choice? Yes, it was by choice. It has been six years of just the three of us trying to survive.  You do what you have to do to keep going and sometimes you have to make really hard choices so you don’t end up out on the streets.

This brings me back to privilege.  Why have my children and I had to struggle for so long? 

I did receive food assistance for four years up until it was decided that I made just a little too much money. This is a societal barrier.  The problem is that, sure, I work full-time, but I don’t make a living wage.  The state took away the support I needed to feed my children.  We ration food. That is hard on the body and the mind.

I am grateful for my job. My years of teaching and my master’s degree opened the door for me to be able to work in the non-profit sector where I can help families with children with disabilities navigate the education system.  I pay it forward by helping make the world better for one person/one family at a time.  This job does not pay a whole lot, but it does allow the flexible schedule that I need to be the parent that my children need.  They have weekly medical appointments that requires a lot traveling.

I have also been homeschooling for the last five years. This was not something that we had planned on.  Homeschooling became a necessity so my children could be successful and reach their potential.  My own health needs require that I have a flexible schedule.  There are days that I am unable to leave my bed, and then there are other days that end up being a 10-hour work day. I do understand that having a flexible work schedule that allows me to work the majority of the time from home is a privilege.  

There was a time that I worked three part-time teaching positions while attending graduate school and homeschooling full-time. That lasted for three years. I don’t remember sleeping much, but I made it work. Now that both my children are part of the Home Link program, which is part of the public school system. I have better schooling support for my children and they are thriving in the alternative learning experience that is available here. I do understand that this placement is a privilege and I am grateful for it.

Even though I have find myself in a better employment and schooling situation, I find that my burnout never seems to end. I have been at some level of burnout for at least two decades.  I don’t have a proper word to describe this never-ending burnout. I do have better days, but it is a constant struggle to even move.  Life keeps going so I must keep pushing myself forward, which only drains me further. It is out of sheer determination that I can maintain my daily responsibilities, but more and more things keep getting piled on. So, I remain stoic and keep treading water. Unfortunately, a person can’t tread water indefinitely. This concerns me greatly.

Life shouldn’t be this hard. Yes, I understand that there are people who have it worse than me.  My point isn’t about my situation alone.  My point applies to everyone who has to constantly struggle in a country that is considered a first world nation and a “Leader of the Free World”.

Do you know what the United States is ranked first in?

As of 2015 the U.S.:

  • ranks 1st in prisoners
  • ranks 1st in death by violence
  • ranks 2nd in ignorance
  • ranks 14th in education
  • ranks 22nd in gender equality
  • ranks 44th in health care efficiency

U.S. Has The Worst Rate Of Maternal Deaths In The Developed World

More American women are dying of pregnancy-related complications than any other developed country. Only in the U.S. has the rate of women who die been rising.

Inequality

The US has the highest income inequality of all rich countries.

Poverty

The US has the second-highest rate of poverty among rich countries

According to a 2012 UNICEF study, 23.1% US kids live in poverty. Other studies place the number a little lower, at about 20%, but both numbers are much higher than in other advanced countries. For black and Hispanic American children, the poverty rate is even higher, at 36% and 31%.

Survival BiasI need to ask that people stop telling others that it was their choice for why they ended up in a particular situation. Poverty is a systematic problem; there are societal barriers in place that prevent many from climbing out of poverty. 

For those of us who have been trying everything to make our lives and the lives of their children better, stop dismissing us by saying that we should just be happy and grateful with what we have. No, just no. 

 

“Every inspirational speech by someone successful should have to start with a disclaimer about survivorship bias.” – xkcd comics

No one should be expected to be happy when they are struggling day in and day out.  For those who keep saying that such and such worked for you, stop!! That is survival bias, otherwise known as bootstrap mentality.

I need people to stop telling others that happiness is a choice. You are not helping Happiness is not choiceanyone. Happiness is not a choice!!  Stop telling people with mental illness and/or disability that all they need to do is choose to be happy.

For many years now I have been focusing on living in the moment, to find happiness in the moment, because my life has been very stressful despite everything I have tried to do to fix the situation. This has been going on for so long that I found myself becoming really irritable.  I had to allow myself to dive into the root cause of this ongoing irritability.  I came to the realization that I am not happy.  Even those moments that I focus on are no longer enough for me to find joy in life. My irritability has been coming from me not wanting to accept that I am not happy. I was being stubborn and didn’t want to face reality.  This brings me to the next part of this productive rant.

Both my children have been described as having anhedonia. I have found that I also have it.

What is anhedonia? To put it simply, it means the absence of joy.

The clinical definition is “Anhedonia, a term first used by Ribot in 1896, is a diminished capacity to experience pleasure. It describes the lack of interest and the withdrawal from all usual pleasant activities. Chapman et al.  defined two different types of hedonic deficit: physical anhedonia and social anhedonia. Physical anhedonia represents an inability to feel physical pleasures (such as eating, touching and sex). Social anhedonia describes an incapacity to experience interpersonal pleasure (such as being and talking to others).”  

So, what’s the point?

What is the point if you find no joy in life?

Unfortunately, I don’t have an answer to this question.

My resilience has gotten me this far. I am not the type to give up. I am a survivor.  I know that I am going to keep on moving forward.  That is who I am.  I keep swimming. 

But, I am so tired . . .

I worry about my children. I find myself crying at night, because I am afraid that my health will continue to decline so badly that I will become a burden on them.  I don’t want that. I cry at night, because I don’t know if my health will let me go back to teaching full-time in the classroom and I know that once the child support stops in 2021, my income will drop significantly. I cry at night because I wish for a better life for my children.  They did not deserve the crappy deal they got with their emotionally abusive father. I cry at night, because I don’t know what it feels like to be in a healthy, supportive, romantic relationship and I have no idea if I will ever know. It has been six years and I haven’t even started dating anyone else and that is not due for the lack of wanting to start. Just trying to survive takes precedence over dating.  I cry at night, because of my stoicism. I do not have the ability to turn it off, and even if I did, I need to remain strong for my children. They know I struggle and they worry. They don’t need the stress of seeing their mother crying. 

I am so tired . . . but, I keep swimming.

I will keep treading water for as long as I can.

I am in this place, because of privilege, societal barriers, the roll of the genetic dice, and the choices I made in life as well as the choices other people in my life made. Choices have a ripple effect not only in your life, but in the lives of others.

I ask that when you make a choice, please be mindful of the impact it will have on those around you. Even if your intent does not come from a place of malice, it is the impact that counts. The impact always carries more weight than the intent.

Intent Versus Impact: When Making a Difference Doesn’t | Miriam Barnett | TEDxTacoma – VIDEO

 

(Image sources linked to images. I do not own any of the images.)

 

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The Love of a Mother and the Pain of Transition

My daughter turned 18 years old last month. My son will be 16 years old at the end of this month.  It is a weird feeling for me.  Lately, I find myself wanting to cry more often. To be honest, I am crying right now.  I am also so proud of them.  My babies . . . .

“Transition” is the term used in the education system for when a student is moving out of high school and into the adult world. In Native American culture, the term “transition” refers to death.  As a parent who has been assisting both my children in the transition process for the past several years, I will say there is a sense of death, but not in the traditional sense.  Transition, as defined in the education system, is a period of great change.  There are aspects of the life that you have had that are coming to an end, but there are also other aspects that are being birthed into existence. 

My children have been blossoming into two amazing young adults. It is a painful and wondrous journey from a parent’s perspective, but also from the perspective of the developing child. The world can be a terrifying place, especially if you live in a world that is not designed for you. 

To be given the privilege of caring for a young life, to support that life, to encourage and protect that life’s growth and development is something I will cherish for eternity. This privilege is also an incredibly difficult one to bear. 

The process of transition into adulthood isn’t just a journey that a developing child goes through. The parents also have to go through a transition as well.  My job description as a mother has shifted over the years as my children have been maturing.  These last two years in high school have seen a major shift in my job description as a mother.

I have had to make myself step away from my babies. My job as their mother has been to give both of them roots, to assure them that they were protected and cared for, and to teach them how to fly on their own. It has come to the point where I need to let them spread their wings.  It is a terrifying endeavor for a mother, particularly for a mother who has raised her children on her own for the last six years. 

I am scared . . .

My children have multiple disabilities. Autism is only one. Mental illness affects their lives at so many levels.  Then there is the trauma and grief of having a father who ran from them. 

My baby girl is graduating high school in June.  She is already a registered voter.  She doesn’t have her driver’s license, but she plans on eventually getting one. She has been researching universities and scholarship information for some time now.  She has dreams of working in the field of environmental science.  I remember when she first looked straight into my eyes.  She was just born and my doctor had placed her on top on my chest while the umbilical cord was cut.  She was so beautiful, blue eyes and a full head of hair.  She didn’t cry until she was given a bath. She would just stare right into you with those intense blue eyes.  She did it to the pediatrician at the hospital as well.  He commented that he had never seen a more intense baby.

My son, my beautiful son, is determined to eventually earn a PhD in Astrophysics. I almost lost him due to pregnancy complications. I was 21 weeks along when everything went to hell.  My body fought so hard and gave everything it had to keep the pregnancy going.  I was almost paralyzed.  He eventually was born healthy at 37 weeks.  I had bones break during his delivery. He came out screaming. He was alive and breathing. That was all that mattered.  My son was alive!  

When I think of transition, I envision the process of Mitosis. At first there is a single cell, the parent cell.  There comes a point in the life cycle of that cell where the chromosomes are replicated, the information and tools needed to live independently is prepared to be passed on to the next generation. Those replicated chromosomes then align in the center of the cell with centrioles moving towards the poles of the cell.  This is the part where the parent cell is getting ready to separate the replicated chromosomes, all that information and tools, in preparation for transition.  Then the painful pulling apart begins.

The parent cell needs to allow the next generation to move ever so slowly away from the protection that the parent cell can provide.  In this analogy, my children and I are at different points in Anaphase.  My daughter and I are closer to Telophase than my son and I are.  At some point all three of us will reach Cytokinesis. This is where my children will fly on their own.  

Mitosis

There are times I am finding it hard to breathe when I think about what is coming. I know that they must be allowed to fly on their own.  They need to have agency of their own lives.  For the last six years it has been about survival, processing trauma and grief, and finding out that we are all stronger and have more resilience than it ever occurred to us. 

I will admit that I am scared about being alone. My children are so much a part of me that I need to redefine who I am after they move on with their lives.  Not only have I been a single mother, I have also been their primary teacher, their confidant, their protector, the one family member that they could count on.  I need to learn how to branch out.  I plan on going back to graduate school and earn a second Master’s degree.  I feel that I need to do this. I need to find a new path that will allow me to live a life that is not centered on the wellbeing of my children.  I need to allow myself to spread my wings as well, but at the same time maintaining a support structure so my children will always feel that someone has their back. 

I have had to struggle on my own for so long. I don’t want that for my children.  I don’t want them to feel alone in the world with no one to turn to.  I will be there for them for as long as I can and I will continue to teach them the tools needed to make it through their days on this confusing planet.  That is a part of my job as a parent that will never change.

I raise my glass to all you parents out there struggling through your own transition and to those who will be facing it in the future. The journey is hard, but it is well worth it.

“Change is situational. Transition, on the other hand, is psychological. It is not those events but rather the inner reorientation or self-redefinition that you have to go through in order to incorporate any of those changes into your life. Without a transition, a change is just a rearrangement of the furniture. Unless transition happens, the change won’t work.”

– William Bridges

Ableism in Society – Autism and Mental Illness

Last week my, children and I attended a traumatic brain injury symposium.  I attended for work purposes, but it ended up resulting in so much more.  If you have read my previous blogs, you would know that both my children and well as myself are autistic.  My daughter also has bipolar, more specifically, Juvenile or Early-onset Bipolar Disorder.  She was officially diagnosed when she was eight years old, two years before her Autism was officially diagnosed.  In hindsight, her autism was obvious from the very beginning, she was even tested twice for Autism as a toddler, but her bipolar symptoms seem to over shadow her autistic traits.  Once she started medications to treat Bipolar, her autistic traits became more apparent.  This eventually led to her receiving an official diagnosis for Autism.

My daughter’s autism diagnosis changed after the DSM-V came out in 2013.  She originally was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).  After a re-evaluation, her diagnosis became Autism Level 2 with accompanying language impairment.  The changes in the DSM-V allowed my daughter to get a much more precise diagnosis allowing her care team to develop a more appropriate care plan. 

My daughter is now 17 years old.  She has attended two Autistics Present Symposiums, and now a traumatic brain injury (TBI) symposium.  My daughter does not have a traumatic brain injury, but she discovered that she felt more at home with the people who attended the TBI symposium than she did at the Autistics Present Symposiums.

When I asked her why, she had a very eye opening answer.  What she discovered at the TBI symposium is the people there carried a lot of anger with them.  They are angry about their situation, they are angry about how other people treat them, and some of the people also spoke about their fear of their condition, their temper, and their struggle to adjust and conform to societal expectations.  The TBI symposium also addressed ableism My daughter told me that she encounters ableism every day.  She doesn’t say anything, because she is using so much energy not to get angry.  She is so worried about losing control.  She is at war with herself all the time trying to keep her from being pulled apart by everything she is experiencing internally and externally.  She has nothing left to self-advocate about the ableism she is encountering. 

My daughter told me that she feels people treat autistic people in a softer, gentler way.  People are more accepting of an autistic person than a person who has bipolar.  There is so much negatively surrounding bipolar. She hears people with bipolar are awful, unkind, and cruel people that hurt other people.  My daughter hears it in the media, in school, and out in the community.  Compounding the problem were the voices she would hear in her head telling her she was bad and even instructing her on how to hurt herself with knives and fire.  Luckily, she has not heard those voices in two years, but she still hears the negativity by real people. 

She feels safer saying she is autistic than telling anyone that she also has bipolar.  It takes a special kind of environment where she feels safe enough to disclose about her bipolar.  She felt more at home with people who have experienced traumatic brain injury, because she understood what they were talking about.  She understood their anger and frustration.  She understood the ableism they face and the impatience of people who do not understand the situation.  I am not saying autistic people don’t face ableism.  They do, a lot.  I think what my daughter was trying to explain was that autistic people might be treated with more understanding, but for a person who has a serious lifelong mental illness, that same understanding is not there.

My daughter’s autism and her bipolar are tightly wound together.  Each impacts the other.  How she experiences the world is a result of how her bipolar and Autism interact.  Society as a whole is telling her that part of her is tolerable and part of her is bad.     

I asked my son, who is 15 years old, what he sees when it comes to the difference between how autistic people are treated versus how people with mental illness are treated.  He told me that he thinks autistic people are treated with more contempt and he gave the examples of ABA, “cure”-based thinking, eugenics versus super human perceptions/intelligence like the new Sherlock Holmes. He then said people with mental illness are treated with more fear.  He feels people fear those who have mental illness. 

According to NAMI:

  • Approximately 1 in 5 adults in the U.S.—43.8 million, or 18.5%—experiences mental illness in a given year.
  • Approximately 1 in 25 adults in the U.S.—9.8 million, or 4.0%—experiences a serious mental illness in a given year that substantially interferes with or limits one or more major life activities.
  • Approximately 1 in 5 youth aged 13–18 (21.4%) experiences a severe mental disorder at some point during their life. For children aged 8–15, the estimate is 13%.
  • 1% of adults in the U.S. live with schizophrenia.
  • 6% of adults in the U.S. live with bipolar disorder.
  • 9% of adults in the U.S.—16 million—had at least one major depressive episode in the past year.6
  • 1% of adults in the U.S. experienced an anxiety disorder such as posttraumatic stress disorder, obsessive-compulsive disorder and specific phobias.
  • Among the 20.2 million adults in the U.S. who experienced a substance use disorder, 50.5%—10.2 million adults—had a co-occurring mental illness.

“NAMI condemns all acts of stigma and discrimination directed against people living with mental illness, whether by intent, ignorance, or insensitivity. Epithets, nicknames, jokes, advertisements, and slurs that refer to individuals with mental illness in a stigmatizing way are cruel. NAMI considers acts of stigma to be discrimination. Stigma reflects prejudice, dehumanizes people with mental illness, trivializes their legitimate concerns, and is a significant barrier to effective delivery of mental health services. Because of stigma, individuals and families are often afraid to seek help; health care providers are often poorly-trained to refer people to mental health professionals and/or mental health practitioners, and services are too often inadequately funded.” (Stigma And Discrimination)

Ableism is considered the intentional or unintentional discrimination or oppression of individuals with disabilities.  Ableism falls right in with racism, sexism, ageism, and classism.  People can be ableist without even realizing it. Ableism can exist in many forms.  Here are some examples:

6 Forms of Ableism We Need to Retire Immediately

Ableism/Language

What is Ableism and how is it harmful?

If you have a child who has been labeled a behavior student in school, ask yourself, “Is ableism in the classroom a possible trigger for your child’s behavior?”

If you are experiencing anger in the work place, ask yourself, “Are you experiencing ableism where you work?”

My daughter wanted to add a quote to the end of the blog:

“Spread the facts about mental illness, not the bias!”

So, how does it feel to actually live your life as opposed to just surviving?      

Have you ever been struggling for so damn long, then find yourself in a situation where things are working out, but your anxiety has gotten you on guard waiting for the possibility of the rug of life to be pulled out from under you again?

Ya, I am there. It sucks the feeling of relief right out of you. It is really annoying. I keep telling myself that I am in a good place right now, that everything I have been working toward professionally all these years is finally starting to materialize and it is not literally killing me in the process, but my damn brain won’t settle.

There are many reasons why I no longer have my own classroom anymore. Due to my physical health, I don’t know if I ever will be able return to a regular classroom teaching position. After nearly 20 years as a teacher, I miss being in a classroom, but my current job is allowing me to stay in the education field and apply my experience and training in a different way by helping one family at a time. I am paying it forward, you might say.

I am still grieving in my personal life. I have been grieving for years. It feels like forever. It is called Complex-PTSD. Even 15 years after my initial diagnosis, the pain is still there.  I have better coping skills now, but it is still hard. These days there are more good days than bad days.

Too much trauma and loss in my life, I suppose. I have been struggling so long just to survive, and be both mom and dad as well as teacher to my children, that I guess I am not sure how to live.

After everything that has happened to me, I have really struggled to convince myself that I have worth. I remind myself constantly. I have worth. I know I have worth.

*Deep breath.*

*Start again.*

I have value. I am worth it. I will not give up!

*Punches chest.*

I am a real person with real needs and dreams. I will not be silenced!

Not again . . .

—————————

Looking at Maslow’s Hierarchy of Needs, I have been at the bottom two levels for many years now.

So, how does it feel to actually live your life as opposed to just surviving?  

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“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.