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.

Advertisements

Hear My Battle Cry

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

Hear My Battle Cry

I will make it through!

I will survive!

Hear my battle cry!

 

I may be hungry.

I may be cold.

I may be in pain.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

I may feel hopeless.

I may feel lost.

I may feel alone and isolated.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

My body may be taxed.

My mind may be flooded.

My spirits may be shattered.

 

But, I will make it through!

I will survive!

Hear my battle cry!

do-not-give-up

Finding Hope

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

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

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

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

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

What kept me going?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The answer:

Because I must!

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

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

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

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

 

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

 

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

― Martin Luther King Jr.

The Story of the Liberal and the Conservative and the Need for Consensus . . . . .

Ah, politics. In the United States, our current presidential election race started in March of 2015. Here we are, 19 months later, and the presidential election is almost over.  The general election is November 8, 2016. With only one more week to go until the 45th president is determined, many in the United States are bracing for the end of this very long, very frustrating, and very bizarre presidential race.

Those in my house have wanted all this turmoil to end some time ago and there is a very good reason for this. We have a unique situation in my house, so I am going to digress from my usual talking points and discuss this unique situation. 

My husband is a conservative and I am a liberal. You can probably imagine the arguments we get into.  Finding middle ground is considerably difficult, especially on issues where our passions are very strong.  Then mix in the fact that I am autistic, which inherently leads to social and communication difficulties on my part. My husband is not autistic, but he does have his own form of communication difficulties.  He struggles with expressing himself effectively, particularly when it comes to issues where emotions are involved.

Two people living under the same roof with opposite views when it comes to which direction this country should go. We basically want the same thing, but it is in the “how” that we differ. This “how” comes from how we see the world. Basically, our perspectives, our values, and what we feel is really important. The different ways that our brains are wired, and our ongoing difficulties to effectively communicate with each other, cause a lot of tension in our house, particularly when it comes to political issues.  

Student News Daily breaks down this conundrum of Liberals vs. Conservatives:

We all want the same things in life. We want freedom; we want the chance for prosperity; we want as few people suffering as possible; we want healthy children; we want to have crime-free streets. The argument is how to achieve them…

Liberals believe in government action to achieve equal opportunity and equality for all. It is the duty of the government to alleviate social ills and to protect civil liberties and individual and human rights. Believe the role of the government should be to guarantee that no one is in need. Liberal policies generally emphasize the need for the government to solve problems.

Conservatives believe in personal responsibility, limited government, free markets, individual liberty, traditional American values and a strong national defense. Believe the role of government should be to provide people the freedom necessary to pursue their own goals. Conservative policies generally emphasize empowerment of the individual to solve problems.

NOTE: The terms “left” and “right” define opposite ends of the political spectrum.  In the United States, liberals are referred to as the left or left-wing and conservatives are referred to as the right or right-wing.  On the U.S. political map, blue represents the Democratic Party (which generally upholds liberal principles) and red represents the Republican Party (which generally upholds conservative principles).

Many times when a person hears the word “conservative” they tend to think “Republican”. This thinking also applies to the word “liberal” being connected to “Democrat”.  In my house this is not the case.  I am an Independent.  I am not affiliated with any political group.  My husband leans towards the Libertarians.  He doesn’t agree with everything that is on the Libertarian Party platform, but he agrees with the general idea of their platform – limit the government and leave us the heck alone so we can make choices for ourselves!

From the Libertarian platform Preamble – “As Libertarians, we seek a world of liberty; a world in which all individuals are sovereign over their own lives and no one is forced to sacrifice his or her values for the benefit of others.”

The simple definition of individualism is “the belief that the needs of each person are more important than the needs of the whole society or group”. That might work for some people, but not for me.  I feel if we are going to be able to have equality and equal opportunity for all then the federal government has to play a big role in accomplishing that.  Again, this is just my view.  There are many that feel that individual states should have more rights over what happens within their borders and that there is too much overreach by the federal government. That is their view and they have that right.  I fight for social justice, so this idea of individualism and autonomy over the needs of the whole society is counter intuitive to my desire for a healthy society for all.

According to Don Young, a healthy society has some underlying values:

  • The economy is an integral part of any society; the economy of a healthy society is governed by democratically developed principles.
  • A society should be judged in terms of the well-being of all its members.
  • A healthy society protects the weak while creating opportunities for the strong to flourish; it respects the cultures and human rights of all sectors. The dominant culture of a healthy society promotes co-operation and collaboration as checks and balances on competitive forces.
  • A healthy society needs robust laws and their fair enforcement, as well as creatively governed autonomous institutions that function to promote well-being. It uses law both to deal justly with those who cause harm or threaten the peace, and to protect freedom of expression and assembly.

When it comes to the Republican Party, I have voted for Republican candidates in the past, but never for president. I cannot in good conscious go along with the current Republican platform.  I feel the current party leaders are trying to take this country backwards, not forwards. 

Then there is the Green Party and the Constitution Party. Nope, not for me. The Green Party is too far left and the Constitution Party is too far right.  I think I am more a centrist that is leaning more to the left side than the right side when it comes to the political spectrum.

This is why I currently find myself leaning towards the Democrat platform. I don’t agree with everything that is on this platform, but the current Democrat platform is focusing on the issues that are important to me.  My passions lie in equality and equal opportunity for all, including marriage equality, separation of church and state, health care for all, education (supporting public schools), disability rights, maintaining a woman’s right to choose, science, and the environment – a very much liberal type of platform.

My husband is very much a gun enthusiast, very much a proponent of the constitution, very much supports individual freedoms. Any sense of infringement on these hot-topic issues causes considerable emotional outbursts. This is where his passions lie. There is nothing wrong with this. I support people defending their passions and expressing their feelings.  The problem is that any talk of services that everyone is required to take part in order for all to have access, any talk of gun legislation, and any legislation that could be construed as potentially impeding individual freedoms causes a lot friction between the two of us.

I think society as a whole needs to be addressed and he feels individualism is more important than society.

The story of the liberal and the conservative and the need for consensus . . . . .

From Don Young in What makes societies healthy?:

Poisonous Parties

In both the UK and the US, government is dominated by two political parties. Historically, political parties grew their strength out of their members, primarily at local and regional levels. The rise of mass media, the 24-hour news cycle, and the take-over of party leadership by ambitious men (and a few women) with little or no local regional roots have fundamentally changed the parties. As the party system is not underpinned or constrained by either broad based memberships or any effective collaborative frameworks, they have become largely representative of special interests. This is a tragedy, because as each party’s base becomes narrower and less diverse, the processes of government are more and more bent to serve the interests of the powerful at the expense of the whole people.

Party funding in the UK and the US

The Conservative Party is nearly entirely funded by finance, industry and super-rich individuals; and the Labour Party by trades union bosses supposedly representing their members. Both parties have lost the bulk of their grass-roots memberships. Few members of Parliament have had any significant careers outside of Westminster; their leaders are largely drawn from much the same small pool of party interns and graduates of elite schools or universities; with women’s and ethnic minorities’ barely represented. Membership subscriptions have become insignificant, and both parties rely on special interest donations. Smaller parties seldom get a real chance of attaining power. The electoral system also prevents a wide range of interests from being represented. Britain’s current attempt at coalition government has been characterised by internal conflict and increasingly poisonous relations between the Liberal Democratic party and the right wing of the Conservatives. The Labour Party is now in conflict with union bosses, who believe that their members’ subscriptions should give them the right to appoint Labour Party candidates for safe parliamentary seats. The small regional parties merit barely any attention on the national scene, and the three major parties each face a nation with large geographical areas where they are barely to be seen.

In the United States, Republicans and Democrats seem to be fighting to the death in Congress, preventing most legislative action, even that which could be beneficial to the nation as a whole. The Republicans in particular, are in thrall to extremist forces that oppose whatever the President and his party proposes. In effect, the government is paralysed. (Highlighted for pertinence.)

The prevailing politics in both the UK and US, funded by massive lobbying interests and powerful commercial institutions, has become a negation of democracy. The interests of the rich and powerful trump the common interest. This has become evident to the wider population, who have lost trust and faith in politicians, big business, big unions, and in particular investment banks, hedge funds, private equity houses, and other financial institutions.

The consequences

As a consequence, it is almost impossible for political parties to come together to agree on issues of extreme national importance. Even when they might agree in principle, many politicians emphasise differences to satisfy increasing number of extremists who make up the rump of party membership. There are no powerful counter-weight institutions to bring together the interests of the work force, business, and regions. The result has been serious economic decline and a widening of the gap between the privileged and the less fortunate. Without national consensus, especially about the nature of a healthy society, it is hard to see how either Britain or America can re-build healthy societies with economies and public services that support the interests of all. (Highlighted for pertinence.)

So, here we are in the United States, trying to find consensus in a world where our government has become paralyzed. It is difficult to navigate such a world, especially when you find yourself living with someone who is politically opposite you and you live in a part of a state where you find yourself the minority when to comes to political matters.

I fear the outcome of this current presidential election. Due to obstructionism and extremists, it doesn’t look good one way and looks even worse the other way. I prefer one candidate over another for very specific reasons, but with everything that has been happening in this country, the world as we knew it under President Obama’s eight years of leadership is over and I don’t do well with unknowns.  

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

explosion

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

My Facebook post from yesterday:

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

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

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

My environment sucks . . .

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

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

What are meltdowns?

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

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

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

What happens during a meltdown?

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

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

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

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

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

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

Here are my past blogs about meltdowns:

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

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

Being Emotionally Exhausted – February 27, 2014

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

Side to Side – May 13, 2015

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

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

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

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

 

I 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.  

I Had an Epiphany . . . .

I had a bit of an epiphany yesterday while at work. How public schools are run is just plain weird.  I know how that must sound.  Here I am a product of the public school system.  I was trained to be public school teacher and have been one for the past 18 years.  Why this epiphany now?

It comes down to the fact that I have been home schooling for the past two years.  The way it is set up in our house is that we combine home schooling and unschooling. Home schooling is defined as “the education of children at home by their parents”.  Unschooling is defined as “an educational method and philosophy that advocates learner-chosen activities as a primary means for learning. While often considered a subset of homeschooling, unschoolers may be as philosophically separate from other homeschoolers as they are from advocates of conventional schooling”.

What this means for us is that I follow all the state mandated educational standards when I create the curriculum that I teach both my children, but the curriculum is geared toward their specific interests and needs using Universal Design for Learning Standards This is true differentiated instruction.

“In EdSpeak: A Glossary of Education Terms, Phrases, Buzzwords, and Jargon, Diane Ravitch defines differentiating instruction as a form of instruction that seeks to “maximize each student’s growth by recognizing that students have different ways of learning, different interests, and different ways of responding to instruction.” – Differentiated Instruction

My son has told me that he feels he has learned more being in a home school setting than he would have if he had stayed in the public school setting. The environment that we have created at home allows my son’s and my daughter’s needs to be met. This allows them to maximize their growth, because they are not constantly bombarded by the constraints and expectations of a public school setting and all the sensory crap that comes with it.

So, what was this about an epiphany?

As I stated, public schools are weird. It is designed to push through large amounts of children, who have been grouped together based on birth year, using boxed up standardized curriculum with boxed up standardized expectations of outcomes and behavior. 

Stand in a straight line! No talking! No fidgeting! Don’t touch the walls! Rush, rush, rush. Test, test, test. Must conform! Must Comply! Must meet standard as dictated by people who don’t know you or your situation. Must complete requirements for things you see no point in and have very little to no interest in. Must do all these things, but you really have no idea why, it is just how it has always been since entering Kindergarten. Also, be social, join a school club, and play sports!!

Then there are the teachers. One person responsible for 30-40 young people. If you are a secondary teacher, that number can be over a hundred or more. Teachers are told they must use differentiated instruction, they must use the canned curriculum, and they must use whatever strategy –de jour the administration or the state has said teachers must learn and use but with limited resources and extra unpaid time.

Um . . . . .

Do you see a problem here?

I understand the need for order. You cannot maintain 30-40 young people without some sort of expected procedure. I understand why a canned curriculum is convenient. A time table is set. Certain concepts have to be covered in a given time period. Everyone is getting access to the same education, right?

Unfortunately, that is not true. A one-sized model, or in this case, one-sized general education setting model actually ends up leaving a lot of kids behind with many falling through the cracks of this system of funneling kids through. It is impossible for one teacher to provide differentiated instruction to everyone when classes are so large, and those who actually get access to it, usually those with IEPs, well, it can be questionable. Is it really quality differentiated instruction? This infographic goes into what differentiation is and what it isn’t.  

Get them to graduate! That’s the point! After that they are on their own. Just get them to graduate!

Ya . . . . .

Over the years I have taught Kindergarten through 12th grade and I have heard that many times in one form or another. Just get them to graduate. I for one feel as a teacher that getting a student to graduate is not the end all be all of our profession.  What about actually educating these kids?  What about actually instilling the love of wonder and the desire to learn instead of shoving standardization down their throats?

schoolsfish

Schools are seen as factories and non-educators are mandating reforms that treat students like products, products that can take anywhere from 13 – 16 years to make. Yet, these non-educators in power are not seeing the return on these products as fast as they want and these products are not up to performance standards that they established without any teacher input. Here is the thing, CHILDREN ARE NOT PRODUCTS!!!!! THEY ARE ALSO NOT NUMBERS!!!

Children are living, breathing, emotional beings and each one of them is unique with unique interests and needs.

Sure, public schools get the job done, sort of. According to data gather by GOVERNING from the National Center for Education Statistics, Common Core of Data State Dropout and Graduation Rate Data, “U.S. public high schools recorded a four-year graduation rate of 80 percent for the 2011-12 school year, an all-time high. Graduation rates vary greatly by state and race. Nationwide, black students graduated at a rate of 69 percent; Hispanics graduated at 73 percent; whites graduated at a rate of 86 percent.”

That 80% is considered average and it is what they are calling an “all-time” high as of 2012. What about the other 20% of high school seniors who did not graduate? Again, this is an average. The number actually varies from state to state and varies by race.

My children are still in high school, but if it wasn’t for the option of home schooling, I fear they would have been part of that 20% failure rate by no fault of their own. We didn’t choose home schooling out of some thinking that public school was this horrid thing or for some sort of religious reason. We chose home schooling due to the intolerable environment of the public school setting becoming too much and my children becoming no longer able to cope with it.

SIDE NOTE: Before anyone suggests private school, no, we cannot afford a private school even if we wanted it and the only private school available near us is a private religious school. We are not religious.

My children made it through public school up until middle school. That is when everything began to fall apart. They struggled up until then, but they were making it with a lot of advocacy on my part.  I taught in the same elementary school that they both first attended. We were lucky in that regard and it helped immensely.  Unfortunately, we were in a small rural community who felt special education was just a babysitting service.  Teachers just started trying their best to support students on IEPs, because the special education department pretty much failed at following  IEPs and failed helping teachers to make specific accommodations that these students needed to be successful. We could have sued the district for failing to adhere to my son’s IEP and for refusing to put my daughter on an IEP when she was struggling more academically then her brother.  We decided to move instead due to my job as a science teacher being cut to less than half-time due to budget cuts.

We tried another school district. My son made it through another year and a half before the special education teacher at the middle school told me that they didn’t know how to help my son. His Agoraphobia and Misophonia were debilitating him so badly that he could no longer attend classes. My son is an independent learner, so this allowed me to continue working. My daughter soon followed her brother in home schooling due to a family trauma. She could no longer handle a full day of school, but she is not an independent learner. This complicated me working. I went from working multiple part-time jobs, to only working one.

Last year she started high school. Things started out okay, attending half-days, but things went spiraling out of control second semester. She ended up in a psychiatric hospital for adolescents. After seven years of trying to get her on an IEP, she finally has one. It took for her to have what we think was a psychotic episode for the school system to finally wake up and see that my daughter had specific needs that they were failing to acknowledge and address simply because she was quiet and not considered a behavioral problem. This was what I was continually told as to why the school system never put her on an IEP. She was an easy person to push through the system. She was a quiet student who didn’t cause problems and who worked her butt off every night trying to meet standard. It was exhausting for her and she ultimately ended up failing and stopped going to classes.

How often does this happen to high school kids around the country? My daughter is autistic, has bipolar, and has multiple learning disabilities that the school failed to address.  How often do kids just give up, because the system failed them?

Here we are, in another new school district, in our third year of home school/unschooling with both my children in high school attending a Home Link program two half-days a week with a dash of public school services thrown in every weekday morning to cover my daughter’s IEP requirements. This Home Link program requires 25 hours of educational time each week and my children have two additional teachers besides myself. We are three weeks in and so far so good.

Crossing my fingers and knocking on wood that my daughter will graduate high school in 2019 and my son will graduate high school in 2020. These next four years are going to be tough. With my family responsibilities, I am only able to work maybe a few times a month as a substitute teacher. Our income is limited. I have to do this for the mental and emotional well-being of my children, but not everyone can do this, though. Most people can’t.

Eighteen years ago I became a teacher. As an undergraduate, we were told then that the education system was archaic and broken. After all these years as a certified professional teacher, I can say that the system is still archaic and broken. The non-educators in charge have only tried to apply Band-Aids to a situation they know nothing about and have systematically stripped the power of teachers to do anything about it on their end.

Public school is weird and I have no answers.

I am going to end with a song by Hank Green called, “This isn’t Hogwarts! A Harry Potter Song”. It seems fitting.