Tag Archives: Aspergers

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.

I Can’t Anymore . . .

NOTE: I feel that this writing is lacking, but I am struggling right now and needed to write and release it out in cyber space in order to reduce the build up of emotions inside of me.  I feel there needs to be a trigger warning, but I am not sure what to warn about. There is mention of depression and the thought of wanting to die, but please understand that I am not in any way suicidal. My hope is that this writing may help someone else that is also going through a difficult situation. Now, deep breath . . .

I can’t. I just can’t anymore. I feel so done with everything.  I know I am grieving again, but a person can only take so much emotional turmoil in their life.  I don’t want to have to start over again.  I have done this so many times before.  I don’t feel I have the energy anymore, but I will carry on.  I always do.  I will continue on, but tonight as I type this, I don’t want to.  I am so tired of it all, the pain, the heartache, the feeling of loss.

Oh, gosh, the pain, always with the pain. I am not just talking about physical pain.  I have a lot of that. My body has been degenerating, well, for as long as I can remember.  Ehlers-Danlos Syndrome will do that to you.  What is hurting me more right now, what is gouging at me, is the emotional pain. Physical pain takes a huge emotional toll on a person, but the lack of emotional support from loved ones makes it almost unbearable.  It is so bad that you want to die.

Do I want to die tonight? No, but I want to give up.  Everything I have been fighting to hold on to for almost 20 years is disintegrating right before my eyes.  It might be an archaic idea, but I am the type that bonds for life.  Unfortunately, I bonded with a man who doesn’t hold these same views.

I have written a lot about this man’s behavior over the past several years. It was a way for me to process through the grief and here I am again, grieving over another lost dream.  A dream of a new future, a new start with this same man who I naively thought shared the same dream as I did. 

I was wrong. His lifestyle choice seems to be more important to him than his own family and our relationship.  It is so frustrating.  I know this man loves me and he loves his children, but he is clueless when it comes to doing what is necessary to maintain a healthy relationship. 

There is a pull to be angry, but why? I have been there before many times.  It is an emotion a person needs to go through when processing things, but one needs to work past the anger.  Sadness and loss is what I feel tonight.  Sadness and loss is what I am familiar with when dealing with this particular man.  I guess tonight this sadness and loss is filled with more answered questions, then unanswered.  At least I have that.  For too many years I did not even have that, which only led to high levels of anxiety. 

Tonight, what I feel is depression and the knowledge that I have done all that I can. It is all on him now.  I fear that this is where it will finally stop, my ongoing effort I mean.  For nearly two decades I have tried and tried, but I can’t anymore.  There comes a time when there is enough evidence to show that you have hit a dead end, because you have done all that you can and still have gotten nowhere.   

I have been through so much in my life, so much crap. I have Complex-PTSD because of it, layers of trauma over many years. I am the autistic one, the person whom others have claimed has no empathy, no feelings, and has been called a robot and stuck up, but have also been told I am too emotional and too sensitive. Well, which is it?  You can’t be too emotional and too sensitive, but also lack empathy and feelings.  It doesn’t work that way.

I can tell you with all honesty that I have extremely strong empathy, so much so that it hurts. I have a very hard time separating what I feel from those I am around, particularly those who I care about. I might just not express it in ways that the general population may expect.  I feel it all, though.  I can’t seem to filter it out, just like I can’t filter out sensory input.  It is all bombarding me at once. 

I am a textbook autistic person. I say what I mean and mean what I say.  There is no hidden message and there is nothing written between the lines. I am a blunt and honest person who adheres to the virtues of integrity and honor.  I am also loyal and trusting, much to my own peril.  As a friend of mine once said, people like she and I seem to have a target on our foreheads, because of how we are. 

Where I come from, non-autistic people seem to be the ones who “lack empathy”, at least they seem to be this way towards others who don’t think like them. This same man that I have been referring to has come to some realizations as of late. 

My basic needs are not the same as his. It has taken him a very long time to come to realize this.  How I express my happiness is also not the same as his way as well as what makes me happy is not the same as what makes him happy.

More on this here —-> I am Real, I am Human, and I Feel!

I do not understand why he would have so much trouble understanding this, but he is still struggling with this whole concept.  This non-autistic man seems to be only able to see the world through his eyes, yet I am the one who is said to be lacking in “theory of mind”.  No, I am not lacking in “theory of mind”. I am just different.

——————–

This is my blog that I wrote in July 2013 entitled “Theory of Mind – The Debate Continues” .

Here is Rachel Cohen-Rottenberg’s blog entitled “A Critique of the Theory of Mind” .

And Ariane Zurcher’s blog entitled “An Empathic Debunking of the Theory Of Mind” .

——————–

How do I deal with all of this? I practice mindfulness.  From What Is Mindfulness? :

“Mindfulness means maintaining a moment-by-moment awareness of our thoughts, feelings, bodily sensations, and surrounding environment.

Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them—without believing, for instance, that there’s a “right” or “wrong” way to think or feel in a given moment. When we practice mindfulness, our thoughts tune into what we’re sensing in the present moment rather than rehashing the past or imagining the future.”

I suppose my writing is one way for me to practice mindfulness. Before I started typing tonight I felt like my life was imploding.  The life that I wanted is basically over and I just couldn’t take it anymore.  After putting myself in the moment and allowing the emotions I was feeling to come out in written form, I am starting to feel the pressure that was building up inside me subside.

Deep breaths .  .  . I will not give up. I will get through this. 

Hear My Battle Cry  (A poem I wrote.)

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

― Martin Luther King Jr.

Seeing the Truth in Patterns

“To understand is to perceive patterns.”

-Isaiah Berlin

Patterns can be beautiful and calming, even sensuous. Patterns can also be ugly and painful. When you have very strong pattern recognition, you see patterns everywhere and in everything. “Connecting the dots” is just something that comes naturally to someone like me.  Whether it is patterns in tile or how leaves grow on a stem or human behavior, I recognize patterns.

This is why it frustrates me so much when others do not see the patterns staring right into their faces, especially when it comes to human behavior. How can you not see the pattern?  It is right there in front of you, why can’t you see it?  Is this a choice on your part or do you really not see it?

I wonder if it is just too painful for those who do not see the patterns of human behavior. Recognizing the pattern would mean that they would have to accept it for what it is and that is something that they cannot bring themselves to do. The truth can hurt.  Maybe this is why I hear “give him/her the benefit of the doubt”  and “let’s just see what happens” even though there has been years of evidence that shows a very clear pattern of behavior.

In Human Behavior Patterns (The Laws of Probability), Joseph “Joe” Panek states:

Isn’t it interesting how we, as human beings, Choose to Perceive Patterns? On one hand, we Choose to recognize some Patterns for what they Truly are. While on the other hand we Choose to analyze other Patterns until we become confused and dizzy.

For example: we know that the sun rises in the east; we know that if we let something slip from our hands it will fall to the ground; and we know that if we plant a petunia Seed it will grow into a petunia flower and not an oak Tree. We understand, and accept these natural Patterns as Truths and facts and we hardly, if ever, ask “Why?”.

However, when it comes to Human Patterns (Human Behavior) we take an entirely different stance or attitude; we automatically look for, and attempt to dissect, the “Why?” of the situation and casually Ignore the fact of the situation.

Why is this so? Why do we accept nature’s Patterns for what they are yet refuse to accept Human Behavior Patterns for what they are …a Pattern?

Since our earliest childhood society, and all of its factions, groups, and organizations, has Instructed us to recognize things for what they are.

Yet this same society has, on the other hand, Indoctrinated us to give people the “benefit of doubt”, at the expense of Truth, when it comes to their Behavior Patterns.

We have been trained, mostly through Guilt, to Forgive and forget when we should be taught to be Aware and understand.

For Awareness and understanding are our most reliable allies. A person’s past is a testimonial to their future. If a person is a liar or a thief, this is what they are. There is no “sugar coating” of these facts. Yet, how many of us blindly give these individuals the “benefit of a doubt” only to rue our Decision and cry out “Why?”.

I was reminded again today that not everyone is willing to “connect the dots” when it comes to human behavior. It was a painful and disappointing reminder to me, because even someone like me who sees patterns everywhere still chooses to not see the truth for what it really is.  I am human with a scientist brain and I have this incredible need to understand.  I ask “why?” all the time.

Humans are messy. There are so many patterns that don’t make sense.  I ask “why?” and the answers that are given often frustrate me or confuse me more.

  • Why does he keep hurting me?
    • This person has a tendency to not clue into my feelings and doesn’t notice a problem until it is too late.
  • Why doesn’t my family see me for who I am?
    • I am so much more than what they want to see.
  • Why have I had to fight for so long to be able to be me?
    • I have worth and I matter.
  • Why is my “voice” not being taken seriously?
    • Please hear me.

I am told I am just supposed to accept things for how they are and move on, that this is how things are done and how people are and there is no wavering from that. I can’t just blindly accept a pattern of behavior that doesn’t make any sense.  Just because something has always been a certain way does not mean it has to always remain so.  That is a choice to stay like that; to remain behaving in such a way that it continues to hurt people as well as yourself.

After finishing writing that paragraph above, I find myself asking another “why?” question.

  • Why am I writing all this?
    • I have been seeing a pattern for a long time and I have not wanted to see the truth in it. 

Autistic people are commonly overly trusting and have very strong loyalty. I am no different.  I stay and continue to be hurt.  I have remained loyal even though the trust had been shattered.  I still don’t know why I did that and continue to do so.  Over the past year he and I have been working on trying to glue that trust back together, but it remains cracked and fragile. I made a choice to give him the benefit of the doubt even though there had been an accumulation of years of evidence showing a pattern of behavior that was very questionable. 

In the above paragraph I wrote, “I can’t just blindly accept a pattern of behavior that doesn’t make any sense. Just because something has always been a certain way does not mean it has to always remain so.  That is a choice to stay like that; to remain behaving in such a way that it continues to hurt people as well as yourself.”  Yet here I am in the same questionable situation again where I am emotionally hurt on a regular basis. I have chosen to be here.  I am the one who has the pattern of behavior that doesn’t make any sense.  

truth-budda

Again, another “why?” question:

  • Why have I done this?
    • Because I listened to my heart instead of my brain. I wanted my family back. I wanted the man I loved back.

Emotions are funny that way. They blind you to the truth. I can rationalize his pattern of behavior all I like, I did it before my trust in him was shattered, but it doesn’t change the fact that the emotional pain continues.  Does he love me? Yes.  Does he mean to hurt me? No.  As I stated before, he is not conscious of my feelings and still doesn’t understand triggers, or the need to feel safe, or why it is so important to me to have my feelings validated.

He has chosen to not have pattern recognition when it comes to people.  It makes him visibly uncomfortable to discuss matters of human nature.  He doesn’t seem to want to be aware of what is happening around him. He just wants to live his life his way and be shut off from the world.  Unfortunately, he has a family that doesn’t fit into his way of doing things. My children and I are very much part of this world and do not want to be cut off from it.  This means I have a difficult choice to make – Do I stay silent, or keep pointing out patterns of behavior hoping to get somewhere, or just leave all together?

I don’t have an answer to that question at this time.

All I see is the pattern and it worries me.

“To Ignore Human Behavior Patterns, along with the Laws of Probability associated with these Patterns, is to subject ourselves to a lifetime of continual victimization. And if we Honestly look at the personal tragedies of our Past, we are likely to discover that they are the result of the people we allow into our lives and the obvious Behavior Patterns we Choose to Ignore.

For, in the end, whether we Choose to accept this fact or not, a Pattern is a Pattern is a Pattern”

– Joseph “Joe” Panek

**Image found at http://funzypics.com/board/pins/387/28592

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 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.

“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.  

The Hidden Meaning Behind “I’m Tired”

What comes to mind when a person tells you they are tired? Do you ask them if they didn’t sleep well the night before?  Do you start talking about changing diets or increasing their amount of exercise?  Do you think of anything at all or do you just nod your head and start chit chatting about other things?

I don’t remember the last time I wasn’t tired. I am perpetually tired.  The word “tired” doesn’t even seem to be an appropriate word for how I feel, but I don’t know what other word to use.  Exhausted? Fatigued? Overloaded? Drained? Burned out? Stressed beyond what would be considered acceptable levels? 

In September 2012, I began writing publicly about my journey with my family. That was eight months after I was diagnosed. I was the third in my family to learn that I was in fact autistic.  We each also have our own co-existing conditions that manifest themselves in ways unique to each of us.  We might share diagnostic labels, but how these conditions present themselves is different depending on whom you are talking about.  Age, personality, genetics, and environment all affect how these presentations occur.

This all plays into what it really means when a person says they are tired. Looking back over my old writings I see that there are common themes in many of them: exhaustion, stress, pain, burnout, and making it through it all.  

When asked how they are doing both my children often have a scripted response of “I’m tired.” That simple two word response is actually a very loaded response. Hidden behind these two words is a long story of struggle, confusion, stress, frustration, pain, and exhaustion.

How does one go about breaking down all the components of “I’m tired”? Do you even try or do you just shrug it off, because you don’t know how to respond to it?  You see the person who said they are tired still getting through their day with everything that is required, so maybe you think their tiredness really isn’t so bad? Maybe you don’t stop and think about the reasons behind their tiredness and just add more to their already full plate. Maybe you are unaware of how their plate changes sizes depending on the day, so you just keep loading more things on them. More requests, more demands, more expectations, more and more until the person either explodes or shuts down.

Human beings are amazing creatures. They can take a lot of shit before it is just too much and their bodies and minds simply cannot endure any more.  Resilience, determination, patience, and stoicism are aspects of me that have gotten me through so much crap in my 41 years on this planet. I endure. I go on.  I keep moving forward, because there is no other direction for me to go.

I’m tired, sooooo very tired. I often wonder if there will be any time in my life when I am not tired.  I think there will be. I really do.  There has to be.  My brain cannot fathom that there will never be a time when I can say I am not tired, so I keep moving forward.  I look forward to that day when I am no longer tired, a day when I can wake up in the morning and actually feel refreshed.  It has become a quest of sorts.  A day free of exhaustion!  That will be an awesome day.

A few past blogs about exhaustion, burnout, and resiliency:

Here I am Again – The Long Road of Living Exhausted

Being Emotionally Exhausted

Exhausted All The Time

Here is the blog I wrote about resiliency.

This blog was a response of mine to Musings of an Aspie’s blog that is entitled “Autistic Regression and Fluid Adaptation”.

Here are some helpful Tumblr blogs about autistic burnout.