Category Archives: mental illness

I Hate Complex-PTSD

(Trigger Warning – Discussion about Trauma)

I hate Complex-PTSD. There is no way around it, I hate it.  I got triggered today.  All it took was for me to be sent spiraling was for me to notice that a relative of mine had changed their profile picture on Facebook.  It was a completely innocent thing for them to do.  There was nothing wrong with the picture that my relative chose, but for me, it was enough to trigger a cascading effect of interacting layers of trauma that I have accumulated over the years.

Complex Post Traumatic Stress Disorder (C-PTSD) is a condition that results from chronic or long-term exposure to emotional trauma over which a victim has little or no control and from which there is little or no hope of escape.”

C-PSTD can occur in such cases of:

  • domestic emotional, physical or sexual abuse
  • childhood emotional, physical or sexual abuse
  • entrapment or kidnapping.
  • slavery or enforced labor.
  • long term imprisonment and torture
  • repeated violations of personal boundaries.
  • long-term objectification.
  • exposure to gaslighting & false accusations
  • long-term exposure to inconsistent, push-pull, splitting or alternating raging & hoovering behaviors.
  • long-term taking care of mentally ill or chronically sick family members.
  • long term exposure to crisis conditions.

How did I get to this point? I grew up in an emotionally neglectful and abusive household.  I married what I knew and the covert emotional manipulation and emotional abuse only got worse.  I have also been taking care of mentally ill family members for over 16 years now.  Then there is the medical trauma I endured 15 years ago that resulted in my initial diagnosis of PTSD which eventually grew to C-PTSD when more and more layers of trauma were exposed.

Post-Traumatic Stress Disorder (PTSD) and C-PTSD are similar, but they do differ in causes and symptoms. C-PTSD results more from chronic repetitive stress from which there is little to no chance of escape. PTSD can result from single events or short term exposure to extreme stress or trauma.

***Remember, C-PTSD is a stress disorder, not a weakness or defect of character nor is it a personality disorder although it is often misdiagnosed as Borderline Personality Disorder.

From The Center for Treatment of Anxiety and Mood Disorders:

CPTSD Symptoms

People who have gone through a long-standing, extremely traumatic situation may exhibit both physical and emotional symptoms related to their ordeal.

Emotional symptoms may include:

  • Rage displayed through violence, destruction of property, or theft
  • Depression, denial, fear of abandonment, thoughts of suicide, anger issues
  • Low self-esteem, panic attacks, self-loathing
  • Perfectionism, blaming others instead of dealing with a situation, selective memory
  • Loss of faith in humanity, distrust, isolation, inability to form close personal relationships
  • Shame, guilt, focusing on wanting revenge
  • Flashbacks, memory repression, dissociation

Victims of C-PTSD may also have physical symptoms, such as:

  • Eating disorders, substance abuse, alcoholism, promiscuity
  • Chronic pain
  • Cardiovascular problems
  • Gastrointestinal problems.
  • Migraines

From Out of the Storm:

Symptoms Shared by CPTSD and PTSD

According to Cloitre et al (2016), CPTSD shares three main symptoms with PTSD which include:

  • Re-experiencing the past – in the form of nightmares and flashbacks.  While in PTSD flashbacks tend to be visual, in CPTSD they are often emotional.  That is,  a sudden, overwhelming rush of emotions such as anger, shame, humiliation, abandonment, and of being small and powerless much like a child would feel when abused.  These are referred to as Emotional Flashbacks (EFs). and can last for minutes, hours or even days (Walker, 2013) . 
  • Sense of threat – constantly on guard or hypervigilant, strong startle reaction
  • Avoidance – of thoughts, feelings, people, places, activities relating to the trauma (e.g., dissociation, derealization)

Symptoms of CPTSD Only

Cloitre et al (2014) suggest that CPTSD differs from PTSD in that it has three additional symptoms:

  • Emotion regulation – Emotional sensitivity; reduced ability to respond to situations in an emotionally appropriate and flexible manner  
  • Negative self-concept – Feeling of worthlessness and defectiveness. Walker suggests that those with CPTSD suffer from toxic shame and have a virulent Inner and Outer Critic.
  • Interpersonal problems – Difficulty feeling close to another person; feeling disconnected, distant or cut off from other people (depersonalization, social anxiety). 

Everyone is unique and the above list of symptoms is not complete and not everyone with C-PTSD will exhibit all the symptoms listed. I, for one, do not have the physical symptoms of “Eating disorders, substance abuse, alcoholism, promiscuity”. There was a time I wanted revenge, but I couldn’t stand that feeling and fought hard against it. Revenge never solves anything and can ultimately destroy the person seeking revenge. I have wanted to die, but I have never had suicidal thoughts.  I also have never been violent, destroyed property, nor committed theft. I do not have cardiovascular problems, but I do experience chest pain during anxiety and panic attacks. I have had to establish healthy boundaries and am no longer in contact with certain family members beyond an occasional email.  I also never lost my ability to form close personal relationships with others.

What makes experiencing all this worse for me is that things that trigger me are typically seen as happy moments by most people, so there is little to no understanding as to why I cut myself off from exposure to reminders and why an unexpected exposure to a photograph of my happy sister, her happy husband, and her new baby affected me so badly.  I didn’t experience anger seeing that photo.  I was terrified!  Pregnancy and children birth reminders are horrible, panic inducing triggers for me. The reason for this is my medical trauma resulted from me being pregnant and giving birth.  I am not going to go into detail, but more information can be found here and here.

I got triggered this morning by a reminder of that horrific time in my life that was my medical trauma, the lack of emotional support I experienced from my family and continue to experience, and all the loss I experienced and continue to experience.  That one trigger not only triggered me regarding my medical trauma, but every  emotional trauma after it. There is a lot.  As I stated before, I was in an emotionally abusive marriage and came from an emotionally manipulative and neglectful home life that followed me into adulthood.    

It is 11:31PM now. I am still struggling. I have been crying off and on all day, but most of my crying was this morning.  How have I coped?  I used music and running.  I let myself ride the melody and lyrics of specifically chosen songs and played them over and over again.  I let the music flow through me and let the emotion flow with it.  I had to.  No more pretending.  I am safe now.  I don’t have to hide my anguish anymore. I have to let my pain out, but I have to do it in a health way.  I have been a runner for 24 years.  Running helps me regulate my anxiety and helps me control my meltdowns.  Running is not for everyone, but it is a way for me to help ground myself when the whole world feels like it is collapsing all around me like it did today.

My theme song today was “Total Eclipse of the Heart” by Bonnie Tyler.  I felt this song fit with how I was feeling and how I wanted to express myself, because I had no words, just tears and pain.  (Lyrics) 

After my run tonight I found myself still feeling lost. The song I needed to listen to was “Send me an Angel” by Real Life.  (Lyrics)

I have been waking up lately with this song playing in my head. I wouldn’t mind at all having an angel sent to me right now with some guidance and emotional support. Days like this are so hard, but they do eventually get better.  I just have to keep moving forward.  A better day will come.  

 

 

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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.

Hear My Battle Cry

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

Hear My Battle Cry

I will make it through!

I will survive!

Hear my battle cry!

 

I may be hungry.

I may be cold.

I may be in pain.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

I may feel hopeless.

I may feel lost.

I may feel alone and isolated.

 

But, I will make it through!

I will survive!

Hear my battle cry!

 

My body may be taxed.

My mind may be flooded.

My spirits may be shattered.

 

But, I will make it through!

I will survive!

Hear my battle cry!

do-not-give-up

Finding Hope

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

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

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

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

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

What kept me going?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The answer:

Because I must!

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

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

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

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

 

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

 

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

― Martin Luther King Jr.

I 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.

“I Don’t Know What To Do.” – A Parent’s Dilemma

NOTE: This blog was posted with my children’s permission. It may be removed at any time if my children feel they no longer want this information shared in this public format. Information contained in this blog involves the struggle with mental illness in conjunction with autism. 

Trigger Warning: Reference to suicidal thoughts and plans for suicide. 

I don’t know what to do.

For seven and a half years we have been trying to find the “right” path, the “right” combinations of medications, the “right” program for school, the “right” way to handle issues at home. I don’t know what the “right” way is anymore.

You can’t help a person who doesn’t want to be helped.

I have to keep reminding myself that. You can’t help a person who doesn’t want to be helped.  All you can do is give them a door and directions on how to go through that door.  They have to decide if they (1) want to go through that door and (2) if they want to put in the effort necessary to go through the door.

Even if they do what is necessary to go through the door, they also have to keep putting in the effort to be able to stay on that other side of the door. If they don’t, they fall backwards.  I understand that maintaining that effort is hard, especially in the beginning.  It is like one step forward and two steps back. This is why proper support is so important.  It keeps the person from sliding too far back.  They need a hand to hold on to, a hand that can help guide them, especially on those really difficult days

The thing is, that hand that is always there can only do so much. That hand can beg, plead, bargain, demand, surrender one day only to try again the next.  The hand can keep doing that day after day, but that hand will start to question how long they can keep at it. How long do they keep putting in the effort when the other person that they are trying to help refuses to grab hold? How long do they allow the other person to continue to disrupt the lives of others in the family? 

It sounds selfish, I know. A parent should not waiver when helping their child.  A parent needs to be there always, right?

I just don’t know what to do anymore.

We have tried so damn much, even tried things multiple times just to make sure. This week my oldest will be ending her 90 day outpatient treatment program and I am afraid for her.  I am afraid what is going to happen next and the stress that it will put on her and our family. The first month and a half had been very promising.  She was calmer than I had seen her in such a long time.  She was excited to go the program. After losing three months of school due to emotional distress, she actually wanted to go to this school/counseling/outpatient program.  Unfortunately, things have taken a rather negative turn.  Over the last month and a half and she has had two depression break through periods.

She never made it to the program last week and only managed three hours of school work. That doesn’t bode well for passing 10th grade.

Seven and a half years ago, my daughter was diagnosed with bipolar. Over the years, that diagnosis evolved into Bipolar II and Autism Level 2 with accompanying expressive language impairment.  She has started on psychiatric medication when she was only eight years old. She has been on as many as six different medications at a time taking them 3 – 5 times a day and still we have been no closer to establishing stabilization of her moods.  She will tell you that the medications have slowed down her mood fluctuations, but that is it. The official term for the type of bipolar she has is Juvenile Onset Bipolar – “Fear of Harm” Phenotype that is ultra-rapid cycling. 

For more information about “Fear of Harm” Phenotype – The 6 Dimensions of the Fear of Harm (FOH) Phenotype

For more information about rapid cycling Bipolar – Rapid Cycling and its Treatment

She ended up in the hospital this past spring due to hallucinations and suicidal thoughts. The voices were telling my daughter to use knives to kill herself. At that time it was thought that maybe what we are dealing with is Schizioaffective Disorder – Bipolar TypeMy daughter has talked about her hallucinations for years, but this was the first time the voices were telling her a suicide plan.  Only time will tell if her diagnosis evolves again.

Whatever my daughter is struggling with, we have yet to find a combination of therapy and medications that will help her stabilize. Our goal is six months of stable moods before we consider her stabilized.

It is not just the rapid mood cycling that is causing issues, it is also the mixture of bipolar and autism. Problems arise, because treatment for one will cause the symptoms of the other to worsen. This requires a very delicate balance of care.  There is also her age to consider.  In the state where we live in, once you turn 13 years old, you have a choice regarding your mental health care.  You can chose to not receive care, you can chose to not have your therapist disclose information to your parents, you can chose outpatient or inpatient care.  Inpatient care can be involuntary, but that takes a very long paper trail documenting pain, struggle, and failure.

We were fortunate enough to be able to have access to the outpatient treatment program that my daughter is just now finishing. It is two hours away from our house and it is an all-day affair (8:00AM to 4:30PM) Monday – Friday. At first it was workable.  It was summer time. I wasn’t working (I’m a teacher). We had been able to get fuel vouchers from Special Mobility Services, but only for a short time.  Our fuel vouchers were revoked for reasons we still do not fully understand and neither does the treatment center nor my daughter’s counselor. 

I live in a state that is rated 49th in mental health care.  What the treatment facility told us was that we had fallen victim to a system that is broken. There was nothing we could do.  I wasn’t going to pull my daughter out of a program that was helping and that she wanted to attend. This meant paying for all that fuel ourselves.  We are a low income family. Having to pay for the fuel in order to get my daughter needed medical care has put a considerable financial hardship on us.  Food is scarce in my house. Bills are paid late or are only partially paid. I stay in town for 8 ½ hours at the library Monday – Friday waiting for my daughter to finish her day, then we drive two hours to get home.  Most days my son joins us so he doesn’t have to be home alone.  We don’t have internet at our house or television services.  Being at the library allows my son access to the internet so he is able to work on school assignments.

Both my children are autistic and both are students of our local Home Link/homeschool program. They have recently started school in a third school district. The first failed to follow my son’s IEP, the second was honest with us about not knowing how to help my son. When people ask my son why he is in home school, he often tells them, “The school district didn’t know how to help me with my mental illness”.  He has debilitating anxiety issues (Generalized Anxiety Disorder, Agoraphobia, and Social Anxiety) as well as depression. He also has misophonia  which causes considerable problems for him. Just to be clear, Autism is not a mental illness.  It is a developmental disorder.  When my son speaks about his mental illness, he means exactly that.  He is not talking about his autism.

For more information about Misophonia – The Symptoms & Triggers of Misophonia

The first school district refused to grant my daughter an IEP citing loopholes as the reason. When we moved to the second school district, we discovered that she was three years behind her peers in reading ability. I ended up getting my daughter a private tutor to reteach her how to read and my son how to write. My daughter has gained ground these past four years, but is now four-five years behind her peers in reading ability.  It took nearly four years and a hospital stay before the second school district granted my daughter an IEP.  Both my children are highly intelligent, but struggle with learning disabilities.  Both have dysgraphia and my daughter also has dyslexia. Both need extra social and emotional support at school.

All four of us, both of my children, my husband, and me tend to have paradoxical effects from medications that are designed to affect the brain in some way. If not paradoxical effects, then no effects at all, meaning no benefit from the medication. Whether it is psychiatric medications (all of us) or pain medications (mainly me) it just doesn’t work for us.  Between adolescence and the sensitivity issue with medication, finding the “right” combination of medication has proven to be quite a challenge for my daughter. 

The most recent change was introducing Lithium. Yes, Lithium, the go to drug for bipolar, has been tried. It affected her bladder, her eyes, and caused agitation. Her body also metabolized it too fast. We could never get a high enough therapeutic dose in her body and the medication was increased three times to pretty high levels. We went back to using Tegretol which she has had some success with in slowing down her mood cycles. Hydroxyzine, which is an allergy medication, has helped with her high levels of anxiety. It is fast acting, but not enough. She was also taking Geodon (another mood stabilizer) that helped strengthen the effects of the Tegretol, but has since stopped due to insurance problems with getting that particular medication. She takes medication three times a day and is able to add a smaller hydroxyzine dose two more times to address her anxiety if needed.

Next week she starts half-day attendance at our local high school where she will receive the services listed on her IEP. The rest of her schooling will be at home.  This past week she fell into another depression period. She stopped caring for herself, stopped caring about anything, becoming defiant and aggressive. 

Part of this is not her fault. She has no control over what her brain does.  What she does have control over is using her skills, not hurting people verbally or physically, and wanting to get help. I understand that when you use up too many “spoons”, using your skills is just not an option.  I get that.  I have been there many times.

I don’t have the same struggles as she does, but I am personally familiar with some of them, and I also have the advantage of being an adult. I have had years of practice in developing my coping skills. I am autistic as well.  I struggle with debilitating anxiety and I also struggle with depression and Complex-PTSD, but I don’t have bipolar.  I have no idea what it is like to be at war with yourself in the way she describes.

I can help guide her in calming strategies and help her establish a sensory friendly environment. I can help her break down her school work into more understandable parts. I can remind her to take her medication and I can take her to her counseling appointments. I can advocate for her both with the doctors and with the school.  I can be there when she needs a hug and encouraging words when all her internal struggles become too much. I can tell her that I love her and will always love her even when her brain is telling her that everyone hates her or when her brain tells her that she hates everyone.  I can be that hand that is always there for her, but she needs to put in effort as well.

I can’t do everything for her. I understand that she is developmentally delayed, much more so than her brother and me, but she is also a teenager with typical teenage behaviors. She does not need to be coddled.  She needs to be treated as the 15 year old that she is.  She is a capable person, but either doesn’t believe it or doesn’t want to be. She regularly pulls out her helpless card citing that she can’t do anything; this includes school work, house work, and any every day thing.  She doesn’t like to be told that she is 15, but says instead that she is nine years old or six years old depending on the day and the level of her anxiety.  Sometimes she is clearly 15 years old and makes it well known, especially when she wants to control everything and everyone. The age she feels fluctuates with her moods.

I often remind myself, particularly on harder days, of all the amazing things that makes my daughter who she is. She loves Doctor Who and Star Wars.  She also loves Science Fiction, Action Adventure, and Fantasy. Her, her brother and I often communicate using echolalia from these different genera.  She speaks the language of science and often talks about becoming a limnologist when she grows up. She is the “Blue Earth Saver” as she is known on the computer games she plays.  She loves animals and is so gentle with them.  She is an incredibly perceptive and empathetic person who is deeply affected by stories of war, violence, death, and struggle. Her school work has to be adjusted for this reason.

My daughter is such a strong person and has such clarity when she is between mood swings. She has been through more crap during her short time on this planet than most adults have had to deal with their entire lives. This is why I think she is tired.  She is tired of the constant struggle.  She is tired of nothing working.  She says the medications just covers things up, just a Band-Aid, they don’t work. She tired of the constant war in her head and feeling afraid to leave our house. She is tired of everything hurting. Too bright, too loud, too rough, too many expectations, no understanding, no order, no predictability.  Home is safe,  home makes sense, home is where her things are, home is where her pets are, home is where she can escape into unconsciousness and sleep the day away.  

Therein lies the problem. She has been progressively giving up. Giving up her dreams of the future, giving up trying to do well in school (she was on the honor roll all through middle school), giving up on practicing her skills, giving up on trying to work with the family as a team, giving up self-care, just plain giving up on everyone and everything.  She is done.  That is it. No more trying. She is done with it all.

With the days getting shorter and colder, she is already beginning to slide backwards. The outpatient center was helping her, but continued progression requires her to put in the effort. She is done.  No more effort. 

So, what does a parent do in this situation? Just let her continue to decline?  Have her end up back in the hospital over and over again?  Have a judge end up finally taking her rights away so she can become an involuntary inpatient? Have a judge take mine and my husband’s rights away as parents which would lead to her being pulled out of our house and put into the system where a social worker controls her life?

These options are unacceptable to me.

I don’t know what to do.

I don’t know what else I can do to help her.

Seven and a half years of fighting for services from the schools, doctors, and the government. Seven and a half years of struggling to find the “right” combinations of medications. Seven and a half years of constant questioning and research on my part in trying to settle that little voice in my head that says we are missing something. She shouldn’t be struggling so much. WE ARE MISSING SOMETHING!!!!

Her autism wasn’t diagnosed until she was 10 years old, two years after she was diagnosed with bipolar and a year after her brother was diagnosed with autism. When she was a toddler, she was tested twice for autism, but they told me she didn’t have a high enough score for the diagnosis.  What I didn’t realize at the time was that they were using a criterion that was biased towards boys. I had to push for her to be reevaluated to check for autism, because once she was put on medication, her autistic traits started to really show. The bipolar was overshadowing her autism.  I had to push to have her evaluated for learning disabilities.  I knew as a teacher and a mom that something wasn’t right, but, once again, she was over looked.  She wasn’t a behavior problem at school.  She was quiet and could be ignored. I had to get outside professionals to evaluate both my children, because the school didn’t see a problem, didn’t see how they both struggled far too much.

I have actually fought for longer than seven and a half years. I have fought for my children’s well-being since they were born. I have been a parent for 15 ½ years.  I am also tired and I am running out of options. 

My hand is there and I will continue to offer it to my daughter no matter what, even if she doesn’t take it. I am a parent.  It is my job. I am not giving up on her. She is my Sunshine and always will be.