05/30/13

Triggers, Mishmash & Whatnot II

Continued from my last post…

Several things have helped me with my triggers not necessarily in order, I wrote them as they came.

1) Discovering that I am Autistic, have Sensory Processing Disorder, and Synesthesia. (How my brain works and how environments affects me, a life-long journey. )

2) Learning about trauma, abuse, bullying, and how it affects people, and can affect Autistics differently.

3) Discovering what triggers are and why I had them.

4) Learning to recognize my triggers and the art of redirection. (I am still learning this and believe it will be a life-long learning process. I have discovered some of my biggest ones that have the potential to send me into deep spirals of anxiety and confusion.)

5) Learning how to discern my emotions from others and embracing my emotions without judgment. (Still learning, it’s all about the process.)

6) Being mindful of my thoughts and actions.

7) Discovering that sensory issues can and are traumatic to me and that I cannot simply acclimate or “overcome” my sensory sensitivities.

8) Accepting these things about myself and utilizing the tools and resources I have found to help me.

Such as listening to music with my headphones on in a store while I shop, so I do not become overwhelmed by all the other sounds.

I also try to keep my focus on my list so I do not become overwhelmed with all of the visual input that can make me cry on some days. I try to plan ahead as much as possible before going to the store. Then, there are my other distractions like taking pictures of things I find amusing. These types of things help me. See even going to Wal-Mart can trigger certain traumatic events in my life. If I hear a song, it can remind me of a person that can rapidly connect all sorts of events throughout my life. It can cause me to relive that moment in the store feeling the full effect of sensory, social, emotional, and physical sensation.

This does happen to me while reading things as well.

I have been able to decrease this and not be filled with anxiety and confusion. I have seen progress in this comparing my reactions even a few months ago to similar situations I have encountered lately. This has progressed because I no longer stay quiet about my anxieties or cognitive distortions. I remind myself of cognitive distortions when I feel my thoughts start to feel anxious and I make a mental note or write down which ones I am doing. I then, counter it with realistic possibilities. I am aware of when my mind wanders into these negative patterns. Since, I have become more aware of negative thinking, causes, and effects of these thinking patterns it has helped me pull out of the spiral sooner.

I do my part to work on stopping them before they spiral.

I still struggle, have challenges and do spiral at times. We are talking about rewiring an entire 40 years of mixed up, confused, anxiety-ridden thinking. I do not voice my negative self-talk. I have been sensitive to not saying things out loud (They were still internalized, and I know that has some sort of affect on me and those around me.) because of how my mom’s negative self-talk affected me growing up. However, it seems hardwired in my kid’s brains. Ariel is the only one who does not voice it, but there have been times when she expressed her “need” for perfection. She gets so frustrated when she does not get something right away. Daniel and Joshua have expressed clearly at times by saying things such as, “I am not good at anything.” “There is something wrong with me.” “I cannot do anything.”

These words rip at my heart.

I do not understand why they automatically think such things. Sometimes I ask and they really have no answers other than, it is how they feel. I try to reassure them and reiterate that emotions are fleeting. I wish I would have known this as a child. I had no one to tell me that what I was feeling was not TRUTH. The negative self-talk and image became my truth because I did not understand anything about emotions. I did not understand that I could feel the emotions, but I did not need to accept them as my identity. However, it is a bit difficult to explain emotions to someone who does not know what they are feeling.

A contorted mesh of connections is hard to explain.

My Aspie mom who did not understand emotions either raised me. We had happy, sad, anger, and depressed. Everything mixed into that was simplified into “You did not clean your room = I am mad.”

“You did listen to me = I am happy,” type of communication.

I learned how to make her happy so she would not be angry because I did not want to feel sad. Gaining knowledge and perspective on emotions has given me the ability to heal. I have been processing and working through so many years of emotional and social confusion (they go together) since October really.

It was then, that I started to see things with more clarity and realized just how much I needed to heal.

Before I used all of my research as a distraction from my pain. It was still very beneficial because it slowly chipped away layer upon layer of distractions, distortions, fears, anxieties, and familiarity. I have not arrived that is for sure, but I have come a long way. It makes me more aware of my children’s environment and it has given me the ability to help them a bit more in learning about emotions, expression, and self-image. I believe this will help them in the future with relationships. I want them to have it better – I think most parents do. I read this other day and it helped me a great deal The Cracked Vessel. I am no stranger to pathological relationships of all sorts. This article reminded me that my PTSD is not going to disappear miraculously.

Everything connects, Autism, sensory, anxiety, depression, PTSD.

They can work together in positive ways to bring healing/understanding or they can work together in negative ways to cause me to spiral. We know that Autism, sensory processing disorder, and synesthesia were part of my DNA working its miracles in my mother’s womb. What we did not know was how traumatic, assaulting, and damaging this world could feel. (Not only to me, but I can only speak for myself.) Who knew that this world would be chaotic, attacking, confusing, and overwhelming to me because of the way my brain processes.

We have just skimmed the surface of what the brain does or what it is capable of doing.

Yay! Neurology I love you! Can’t wait to see what else you discover. I wrote this post in hopes of helping others see that the world they may find full of pleasantries and loads of fun can be painful, scary, and confusing to others. It is not all negative, however, the majority of my life it seemed that way. I am working my way into this world on my terms and in healthy ways for the way my brain works.

Things that may seem very minuscule to some could be traumatic to others.

This goes for everyone, something that I feel is not a big deal could be devastating to another and vice versa. The thought of a sudden loud fire alarm still causes me to feel panicky, sick to my stomach, and makes my ears hurt. I see red blinking lights and my hands over my ears yelling, “Oh, my gosh! Why do they do this?” While my teacher tells me to be quite and just do what I am told. Agg! Flashback! I hope these two posts give some clarity to how the sensory, social, and emotional world can affect someone on the spectrum. I will list C-PTSD symptoms below because I do not feel enough people know about it.

I will also link to PTSD symptoms along with several more resources, like always.

I know that I have written about some of this before, but once again I have a better understanding about myself. I believe there are many people out there who do not realize that they are suffering from C-PTSD and/or PTSD. When I understood what it was and that I was suffering it opened up a door to healing. I had answers for why I was reacting in certain ways. I finally, understood that I could do something about it. I understood these things for my children, but I had not connected it for myself. I hope this post brings a little more awareness and some practical ideas that others can use. If anything I have resources that can be beneficial!

What additional symptoms are seen in Complex PTSD?

An individual who experienced a prolonged period (months to years) of chronic victimization and total control by another may also experience the following difficulties:

Emotional Regulation. May include persistent sadness, suicidal thoughts, explosive anger, or inhibited anger.
Consciousness. Includes forgetting traumatic events, reliving traumatic events, or having episodes in which one feels detached from one’s mental processes or body (dissociation).
Self-Perception. May include helplessness, shame, guilt, stigma, and a sense of being completely different from other human beings.
Distorted Perceptions of the Perpetrator. Examples include attributing total power to the perpetrator, becoming preoccupied with the relationship to the perpetrator, or preoccupied with revenge.
Relations with Others. Examples include isolation, distrust, or a repeated search for a rescuer.
One’s System of Meanings. May include a loss of sustaining faith or a sense of hopelessness and despair.

Resource list. (Reminder, I may not always agree with the resources I share, but I leave it up to you to determine what information helps you. I find good stuff in all sorts of info even if I do not agree with it.)

Unraveling Emotional Triggers

Post-traumatic stress disorder in people with learning disability

A Developmental Approach to Understanding Complex PTSD

An interesting discussion on WrongPlanet.net Complex PTSD and Autism

I do not want to leave out the pressure and challenges that parents can be under as well. I will share this link about a mother who stated that she felt trauma from situations with her ASD child. I ask people to open-minded about this. There is no attack toward the child. The parents are not trying to make their child(ren) look horrible, they are simply sharing their experience. As with everything, stress, love, empathy, anxiety, trauma, we all differ in how we are affected. We all differ in how we process and respond. I can relate, but mine is enhanced by other factors as well. I have to work very hard at keeping my balance on a daily basis. Some days I do not do so well, other days it more joy than I can articulate. That is life. Here is the link. ASD and PTSD

Everyone has their own triggers they can be from food to health issues. I will share some other things that I read in regards to different triggers.

I might have shared this before I cannot remember I consume so much information! Uncover and Manipulate Your Triggers to Optimize Your Work and Life

Triggers: What Are They? How Do I Deal With Them?

These next two are geared toward employment, but I decided to share the information anyway.

How To Hack Your Brain – Part I: Trumping Cultural Triggers

Stop Reacting! Start Responding: How to Hack Your Brain Part 2

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05/29/13

Triggers, Mishmash & Whatnot I

There has been a “new” joke that has paraded around the internet with folks. They have been placing “trigger warning” before any and everything. At first, I was confused by this because trigger warnings are a serious matter to me. I have been abused, and I am diagnosed with PTSD. I have some serious triggers that can affect me and cause me to spiral into PTSD symptoms. Since, I am not normally in the “social know” I had no idea why people were doing this.

I am still unsure, I can infer based upon observations, but I may be inaccurate.

At first, every time I saw the words I took it as a serious warning. It caused me not to read several blogs because of this confusion. However, I get that it is some sort of joke now after several months. I am not offended or anything, but I would like to address some of the importance behind the words “trigger warning” for people such as myself.

I need the warnings at times.

If I read or see any sort of violence, abuse, trauma, type of posts or images I can be affected in a way that causes me to shutdown or relive my own experiences. Interesting side note: There are certain times when I can watch shows like Law & Order SUV and not have issues, but if I see the actual act of violence even if I know it is not real it can cause a physical reaction and PTSD symptoms.

There are other times when I cannot even look at a violent cartoon.

I have not figured out the why’s of that yet. I have to avoid news and graphic images that show horrible incidents. There are even times when I see a picture of a smiling person who has died that causes me to sink into depression, especially, if it was a horrific scenario. I understand people wanting to share the happy pictures of their loved ones and remember them, but it does cause an emotional response in me. Death I understand, how others respond to death is what I do not understand. I have past experiences of social confusion and hurt when it comes to situations regarding death. It can take me days to recover. My mind, body, and spirit become consumed with images of the person, how they were harmed or passed away, their family and friends who are suffering and many other thoughts form.

If I do not redirect myself, I will start connecting events that are similar from my lifetime.

It can manifest a path of hopeless thoughts and remind me of all the times that I “failed” socially or when people “failed” me with being empathetic toward my requests. My cynical side can wander in and try to convince me that there is nothing good in the world and I can do nothing about it. I used to be unaware of this; I assumed I had no control over these thoughts. I have learned that indeed, I do have intrusive thoughts that seem to come from nowhere, but the discovery of triggers has helped me understand that this is not the case. Many, many things stir my thoughts.

So what are triggers?

“A trigger is something that sets off a memory tape or flashback transporting the person back to the event of her/his original trauma .

Triggers are very personal; different things trigger different people. The survivor may begin to avoid situations and stimuli that she/he thinks triggered the flashback. She/he will react to this flashback, trigger with an emotional intensity similar to that at the time of the trauma. A person’s triggers are activated through one or more of the five senses: sight, sound, touch, smell, and taste.” ~ What is a Trigger?

I am sure that most people are aware of triggers.

However, I wonder how many people on a conscious level know their triggers and know how they affect their daily life. Not many people consider the triggers of children. I am hypersensitive to my children’s triggers. I try to stay aware as much as possible because their triggers can set off a chain of events. Our whole household can turn into a cluster of trigger set-offs! Of course, I am not always on top of it that is not possible. I will use Ariel as an example. A few years ago, she hurt her foot badly from jumping on the bed and falling off. She could not walk on it for about 6 weeks. (Short version) Now anytime she hurts that foot she begins to shake, she starts crying, and will repeat, “Oh, no! Not again, please, please not again.”

It is pretty much word for word every time.

She is accident prone on her feet for some reason. It does not matter if she accidentally stubs her toe or slightly twists her ankle while running, she will respond with wailing, shaking, and the fear that her foot is badly hurt again. I know that my children have triggers from sensory sensitivity as well it causes them to respond in ways that may seem like “overreacting” to people.

Joshua has covered his ears and screamed at the top of his lungs because something was too loud in a store.

Daniel has had a complete meltdown in a Wal-Mart because the lights were flickering and hurting his head. For me, I had no idea that my sensory system felt attacked on an hourly basis in certain environments. I had no idea that the reason why I would lock myself away in my apartment, reading, listening to music, and consuming my special interests that I was creating a healing environment for myself. I did not realize that my stims were bringing me balance and comfort. I did not even know what a stim was until learning about Autism.

I have many sensory triggers.

If you have not read this, I highly recommend it PTSD and Autism from the Autism Discussion Page. It is one my favorite resources on facebook.

Sometimes my triggers can be good.

For instance, moving back to my home town I have had several times when the smell of the grass or certain flowers have consumed me and transported me to childhood happiness. There have been moments when I looked at the moon and I could feel the color of purple and indigo making me remember times when I felt safe. My negative triggers have been more consuming for most of my life since it feels like I have many more than positive ones.

Although, that is slowly changing.

I have many social triggers, food triggers, abuse triggers, being manipulated triggers, being rejected, abandoned, isolated, as well as feel good triggers. All of them can have positive and negative effects on me. Linking to two reads here. Never Waste a Good Trigger: Part One and Never Waste a Good Trigger: Part Two. In the past, I allowed my loops to take over my brain – it became an addiction. Whenever I was triggered by something negative, I would let the emotions consume me. It caused me spiral into negative self-talk. I was so familiar with negative feelings that I would actually feel some sort of pleasure from feeding my anxieties and fears.

When I would be triggered, I would go and feed into my trigger creating even more.

There is something to consider here though, and that is I had NO IDEA that I was triggered by other people’s emotions. Whatever, their triggers and emotional responses to those triggers were would leap onto to me. It truly felt that way. I would be “happy-everything-is-going-well-today-Angel” and suddenly I would be hit with anger, fear, sadness, sorrow, love … etc. I would then, spend hours upon hours trying to figure out what I was feeling and why.

Not only did I have my own inability to discern my emotions, but also I had no clue about how to process other’s emotions.

This alone is traumatic add other components such as being abused from childhood into adulthood by loved ones, friends, and significant others. I was emotionally abandoned which I believe played a key role in my need to find someone, anyone to love me and tell me that I mattered AND existed. I felt invisible and confused much of my life. I would also, go into the polar opposite and feel as though I did not need a single person and I was VERY happy all alone.

I would feel as though I did not need anyone to love me.

Because of my synesthesia (Remember that synesthesia is a spectrum too not one person is a like there may be similarities, but it is different for each individual.) my emotions and sensory are quite intense. That mixed in with my excellent long- term memory (Most of the time, I have another post coming about losing a chuck of my memory that I only recently discovered was missing.) my triggers can take on a world of their own. Well, they did until I started applying mindfulness as my way of being.

Before that, my world felt much more out of control.

I felt afraid all the time. I never knew what was going to set me off. I did not understand why things set me off. I did not know that other people did not feel emotions as if they were daggers into the body, or sudden attacks upon their soul. I did not know that others did not see music in designs, that paintings dance, or words have powerful punches with sounds, figures, colors, and movement. I thought everyone felt as I did, but I also knew this could not be the case because people mocked me, got frustrated, or called me “strange” when I shared these things. Social confusion has been one of my biggest triggers. I do plan on writing about that too – it is in progress.

In the next post I share what has helped me and many resources!

Part two tomorrow …

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05/17/13

“Angel Is A Centerfold” (Um, No!)

When I was a young girl, around eightish the song “Centerfold” by the J. Geils Band was blaring all over the radio. My aunts who were four and five years older than me, played the “Freeze Frame” album all the time. My step mom’s sister, as well as my dad’s sisters were frequently over on the weekends when I went to visit. I normally, spent much of my time with them because dad was busy doing things… I loved the song “Freeze Frame.” My aunts made up dances and I learned them! They included me into the dances despite being too young for such teenage hipsters.

These are some of my favorite memories.

We watched scary movies, listened to great music, they let me dance all wild and do my gymnastics all over the yard, just being my silly self, (I have not changed much.) and they did what “naughty” teenagers do. Hee hee My dad and step mom had parties a lot. My dad had his band over for practice A LOT also. That reminds me I have another post floating in my head about Freddie Mercury. My dad would take on the persona of any musician – he did a rock awesome Freddie. It helped that he had many similar features as him as well.

Tonight on my way home from the store “Centerfold” came on.

I turned it up and as I was singing thinking my happy thoughts, I was consumed with emotion. First, it was dread, but I did not know why. Then, confusion it ended in laughter. I will explain in a moment. This week has been great with my mom. It has been taxing, draining, exhausting, but it was a great visit. However, I was overcome with many emotions. I became bombarded with her negative emotions that she has connected to this town. She tried very hard to be positive, but I felt her energy. I knew what she was thinking and feeling even if I could not articulate the exact emotion – I knew.

I had my emotions about her being here.

On Wednesday, she shared a whole bunch of old photos that stirred up a mess of emotions that I am still trying to process and find words for, I am working on a post for that because it requires an entire post itself. My body, spirit, and mind absorbed my children’s emotions too. Those are a not as complicated, but mixed with everyone else and my own it’s a bit much to process. I am feeling good about tonight’s emotional surprise though. I have made some huge progress in identifying quickly my emotions, knowing what triggered them, and articulating them. Not always, but yesterday I was able to and now this evening.

I was able to see them as emotions without judgment.

I allowed myself to feel them with the knowledge that they would be fleeting. When I heard the song, dread poured into my soul because kids at school made fun of me about the song. They would point and sing, “Angel Is A Centerfold” and I would sing back laughing and dancing. I had no idea what a centerfold was, all I knew was that I thought it was super cool whenever I heard a song with my name in it. I thought the kids thought it was cool too. It was not until several years later possibly as an early teen, I cannot exactly recall, that I discovered what a centerfold was. Even when I watched the video, I did not understand it.

I do remember that one of the boys started laughing at me on the bus about it.

A group of boys who bullied me at the bus stop started singing it on the bus ride home. I laughed and sang along and he stopped saying something like, “What is wrong with you? Are you stupid or something?” I did not understand why he said that asked what he meant. He said, “Angel is a centerfold. You’re naked! Ha ha ha” I was so confused; I remember looking at myself thinking, what is he talking about? I have all my clothes on. It gave the boys more ammunition to call me a “ding bat” “spacey” and “stupid.”

All of that filled my innards when the song first came on.

It caused dread and confusion. After I processed that, I began to laugh. I felt incredibly thankful to be me. I thought how wonderful it was to stay so innocent of such things despite the abuse that had happened to me when I was even younger than that. I thought about all of the things that I had been exposed to that at the time I had no clue was VERY much too adult for my age. I still have memories of things that I do not realize were inappropriate for me until it is something to that my kids may be exposed to. There have been times when David asked me why I left something on the TV when the kids were in the room. I was clueless that it would be inappropriate.

I did not understand what was happening on the show.

I found it confusing, which is why the TV stays off. I am not SO naive that I would let them watch anything really bad, but I do have my moments when I just-do-not-get-it. I am SUPER sensitive at times too. My good memories of the song, dancing with my aunts took over and washed away the dread and confusion. I wanted to be sure and document this because I have had an intense week, but I have also made some great progress with my emotions and some of my trauma. Now, there is another post on the way that I am unsure as to how I feel about it. I will say I find it interesting how an object can trigger all sorts of negative associations. Especially, when it is something as innocent as a child’s toy phone.

I will tackle those emotions later for now I am dancing to this! (Yes, we did the dance in the video.)

I just had a thought, I realized how ironic it was that as a child my mom could not keep clothes on me. I was a child who took her clothes off at any chance I could get. It was such a frustration and challenge for my mom. I am glad I finally found clothes I could wear! I would never be able to be a centerfold girl though, nope, just could not do it.

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05/8/13

Shutdown!

This week has proven to be a great challenge for me. I am still at a loss of words. I can barely speak to those in my “real” life. It takes all effort to try to pull words together to make any sort of communication. I continue to apologize and say, “I am sorry, I have no words.” I am struggling even now to pull the letters together in my brain to form words, creating sentences. I find it difficult to get them flowing from my fingertips onto the keyboard. However, it is much easier than trying to get the words out of my mouth.

It is not happening without great effort.

I found myself staring at my computer screen this morning unable to pull myself out of that state. I heard all that was going on around me, but I could not move. I stared with jumbled words and sadness. I have several reasons for this happening to me, but I am unable to articulate it. This starting happening last week when I was faced with several social issues that sank me into near anxiety attacks. I was able to work through them fairly well. Then, came an emotional rush of feeling disconnected from people. I felt lost and without friends or anyone to turn to many times it is that way. I have no one that I can share with about what is happening in my life.

I have no one to confide in about the challenges that I am facing.

I can to a certain point on my blog and with some friends when they are not in their own state of shutdown or consumed with daily life. I also, do not want to “bother” anyone with my “problems.” I have my personal struggles that I am dealing with and the feeling of loss, but I cannot explain what I feel loss about. Possibly my grandiose imaginations, which happen to be the things that give me hope on a regular basis. Once I feel that I have lost them too, I feel hopeless. I feel as though I will “never” get out of my situation. I will “never” be able to follow through on my plans and goals.

At those times, even my special interests fail me.

I know that this will pass. It always does. I do know that much of this has to do with having no time alone. I have not been able to get away and do anything for myself by myself. Last Friday, I had to spend my time running errands. I have spent much of my time trying to help Daniel because he is having a very challenging week. I believe he is adjusting to his new glasses, though it is a very good thing and he is happy, they are still a new adjustment. I have had to cancel some of his sessions for therapy and was thankful that this week he did not have live lessons with his teachers because I am sure I would have canceled them.

It is does not help that he is behind on his lessons and they have to be done by May 21st.

The stress of all the phone calls with teachers and talking to therapists has worn me out. He has been going through some sort of transition as well where the things that used to help him no longer help. He is beginning to reject all of my efforts to help him. He is getting even more upset at me when I try to help him. It causes me to shutdown because I do not know what to do; it triggers me to go into research mode. However, I have to gear my focus on finding strategies and researching ways to help Joshua. He needs my help too with ways to cope and to find ways to make reading and handwriting less stressful for him. Ariel needs me and I am seeing more and more each day how all of them need more emotional support.

I am fighting off the words, “I am a failure.”

Yesterday, after yet another moment of the school day not going in a positive direction, the tears came rushing out. I was so overwhelmed with so many things. I was struggling with my personal issues that I couldn’t (cannot) share with anyone and I just-needed-a-good-day! By evening, I felt catatonic, much like this morning. (“appearing to be in a daze or stupor; unresponsive“) I had enough in me to respond and take care of my children, but that took everything out of me. I am very good had hiding these things from my children. However, I have no doubt that they feel it and that could explain why Ariel sat next to me cuddling with me last night. She does not cuddle all that often.

I suppose I am finding some words at the moment.

It has occurred to me that I am under a great deal of stress. I am still processing many things that the boy’s teachers have said to me. I am not able to write everything out in regards to school at this time. I need to get them through the next two weeks. Mainly, Daniel since he is behind on his lessons. My mom is coming on Saturday AND I am excited about that! However, it also means that I need to keep the kids focused on school while she is in town. I am looking forward to hanging out with her and doing some fun things. I am going to see if she and my grandma want to go to lunch for Mother’s Day or something.

Big fat sigh…

I think that is all I can get out of my head now. My brain still feels all clustered and clogged, but a little better. Quite honestly, I think the problem is that I have not had any downtime. I feel stretched very thin. I am being pulled in too many directions and not having any time to gather my pieces back into a whole. I am going to take the kids outside, get a little sun on my face, and see about getting out of the house for a little bit tonight. Maybe I just need to drive around town with my music blaring, singing at the top of my lungs for a while. I will be the coolest mom in a minivan EVER! That’s all I got folks, I feel my words fading quickly.

Picture (of random and odd potatoes and my paintings) time!

[Show as slideshow]

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05/4/13

Autism Happy: New Post Series

I have been pondering (shocker!) about the month of April. I found it interesting how I went from dread of not wanting to have anything to do with Autism Awareness/Acceptance Month, to finding my peaceful place. Eventually, becoming enthused with the smart part that I get to play in Autism awareness/acceptance everyday. I felt quietly tucked away in the community. There were some days when I felt irritated, annoyed, isolated, disconnected, dismayed, and/or overwrought with disillusionment. Then, there were other days when I felt like leaping with joy, full of connection, understanding, hope, excitement, and discovering new positives within the community from various perspectives.

It was a tough month for me.

It was tough personally, physically, emotionally and mentally. I dealt with several issues from my past. I became more open with some of my family about my personal struggles with my home life and within myself. I went through several despairing moments that I did not share with anyone. I struggled with finding positives in the midst of some of my challenges because the challenges are directly linked to Autism. It did not mean that I hated Autism or that I wish my son or I were not Autistic.

It was just that many of my experiences were difficult and I felt alone.

There are times when I shy away from sharing the reality of things because I do not want people to think of Autism in a negative way. There is some sort of balance that I think all of us must find to be able to share our struggles and challenges without being attacked for expressing ourselves. At the same, I DO NOT want people to jump on anything that is a challenge for me and assume that ALL Autistics have the same struggles or feel the same way. My challenges are different. My son’s are different. He is somewhere in the middle of the spectrum. In some areas he is closer to what would be categorized as Aspergers, but in more areas, he is not. Though there is really no way to “categorize.” or “label” properly.

He is Autistic, I am Autistic, and we both have similar challenges and unrelated challenges.

On the days when I feel overwhelmed, it gets to me. I get tired, drained, and sometimes depressed. I try to find my focus and hope, but when I am the only who can help and everything I do does not help I get down. When I feel alone in my anxiety, fears, loops, and begin to feel disconnected from the community I get sad and want to fade away. I start to think that I have not achieved anything and that I am stuck in failures.

I find it hard to see what I am doing or what I have done.

I suppose that is what friends, spouses, and family are for; I have not had people there to remind me. However, I have lately. Some of my family has made it a point to remind me that I am loved and that I matter. It has made a huge difference. I do not do this all the time. When it does happen, I get frustrated because I do not want to think those things or feel that way.

I know that it is not true.

The negative thoughts are not true thoughts. However, there are many things that can trigger the thoughts. They range from feeling as though I have lost a friend to being confused by a social interactions, or too many social interactions. I know that they are distorted cognitive thinking. Now I am getting better at recognizing how they are triggered. I decided that when I begin to feel this way that I am going to create a post that points out one or more positives that I see/feel/hear/connect to/relate to Autism. I chose Autism Happy because many times the triggers that start negative thinking are related to my Autistic being.

If I read something that has a negative connotation in regards to Autism, I begin to process.

My mind process starts with internalizing and attacking anything that is similar to the negatives mentioned. I do not do this all the time and other Autistics may not do this. My mom is Autistic and does not do that at all. If she sees or hears anything negative she normally thinks, “Well they do not know what they are talking about.” I wish I could do that all the time, but I cannot. Even when I know that they do not know what they are talking about, I still have a tinge of, “Well maybe?” On those days, I can quickly dismiss it.

To help my process of dismissing negative thoughts, I will point out the positives.

I may only share an image or share music with a short explanation of how it is connected to an Autism Happy feeling. I want to be happy about being Autistic. I want my son to be happy about it too. I do not want the affects of my past or a distorted world image to distort my self-esteem or my child’s self-esteem. I want to remember all the good when I feel overwhelmed with negativity or the feelings of hopelessness. I also, may post when I am in my “Autistic Happy Loop.” I have strayed away from sharing that side. I feel as though I have been swallowed up into a whirlpool of frenzy for several months. I am much more balanced, but I still have my moments (hours, days) when I am having a hard time.

I may also share what caused my trigger.

It could possibly help others pinpoint their triggers as well. In the mean time, today I am feeling positive and hopeful. I am in kind of an Autism Happy Loop and when I am like that, I laugh and do goofy things a lot. Yesterday, I was stuck on the letter “Q” and I found it hilarious. Today I am stuck on purple monkeys.

I have no idea why.

I just think that they are hilarious and it makes me laugh every time I think about them. I am still quite serious and focused on my current research obsession, emotional/social/academic needs of gifted children. There is a post coming soon I am sure.

That is only one.

I am focusing on several interests at the moment, but it is taking longer to process them. I hope that having a positive focus now when I am struck with feelings of isolation; disconnect, fears, anxieties, etc… I am able to redirect quicker. Today what makes me Autism happy? My goofiness that seems quite odd and childish to others, however, I love a bit of cheesy goofiness.

To help remind me and to share a bit of my Autism Happy here are some purple monkeys! (And, a cow on skates.)

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04/28/13

High School Trauma: Road to Recovery II

I did not recognize it until the next day, but I went into PTSD (C-PTSD) symptoms. Anxiety filled me, as well as irritability, I was shaking/shivering, cold, nauseous and I started to fixate on facebook. I made myself get off, I had tears, all the sudden I felt ugly, worthless, depressed, panicked at noise, everything became loud and buzzing. I could not eat and I could not sleep. I felt alone and scared. It was not until the next morning that it all made sense when I was still having those symptoms. They were intensified because I had not slept in a couple of days and because of my confusing interaction with Joshua’s teacher, but at least I was able to understand what was happening.

My high school days were some of the most painful and confusing times.

I was in an abusive relationship for three years of my stint in that school. However, I was unaware that I was being abused. I knew that my unnameable fears and anxieties were at high levels during that time. I was stalked; my personal space and time were continually violated. Other girls who called me things like “slut” and “whore” bullied me. There were rumors spread about me that were vile, I found out later that my boyfriend said many of them at the time, or my so called friends. While I sat at home babysitting my sisters taking care of the household because my mom worked 50-60 hours a week, and my step dad at the time was a drug using, drug selling, womanizing lazy jerk, there were claims that I was out partying and hooking up with numerous guys. Nice.

Many other things happened too.

I felt like I had to continually watch my back. Several girls hated me and I did not know why. Many guys confused me. My teachers did not change their attitude toward me either. I had two teachers who ever said anything positive to me. My U.S. History teacher, who said that he knew that I was much smarter than I let on and my literature teacher who said she wanted to see me in advanced literature. She was impressed with my writing skills and with my major assignment that I did on “Death.” My economics teacher did compliment me because of my hard work on a stock exchange project we did. I did get an award for that – I just remembered that.

It is hard to remember any good memories because there were so many traumatic ones.

In my home life, my social life, and at school. I had no safe place anywhere. I was in the vice-principles office often. Either for skipping class or smoking. I was in the nurses office a lot too because I always felt sick. They never asked me why, they always assumed I just did not want to go to class because I was a delinquent. I could not tell them that a math teacher made fun of me all the time in front of the class. He was the football coach and found it amusing to mock me when I asked questions. I could not tell them that the P.E. teacher found it amusing to measure my BMI and then proceed to call me obese. (He said that he was joking.) When I was maybe 120 pounds. That was a great thing to say to a teenage girl who had a boyfriend who was already calling her fat.

I dropped down to 100 pound by the next years.

I could not tell them that I skipped and hid in the bathroom because I found a huge bag of marijuana in my step dad’s coat pocket one day and I just needed to be alone to try and process what to do. Or that my boyfriend accused me of cheating on him. Or that my mom woke me up at three in the morning demanding that I do the dishes even though we had no dish soap so I was forced to use powdered laundry detergent. I could not tell them that the boys made derogatory comments to me that half the time I did not understand so I did not want to be in class. I could not tell them that several girls in another class that I was in threatened me.

No one listened and I did not know how to be heard.

When I tried to tell my story, they did not believe me or thought that I was being unruly because I could not get my words out. This caused me to have meltdowns, one major one with screaming, hitting, and raging in the office. IN ADDITION, when that happened I recall at least once being asked if I was having my period. That is not even the half of my life that happened while in that school. I understood how important it was for me to go and turn my thoughts into positives. I really wanted to see my niece perform. I wanted to be there for my sister, and I wanted to see my dad and step mom. I decided this time around I was not going to internalize my fears. I shared a little on facebook to get it out. It gave me the strength to text my dad and tell him that I was having problems because of all the negatives I had associated with that place.

Thankfully, he was supportive along with my sister and step mom.

They did not make a big deal out of it, but I could tell they were trying to “be there” for me. My dad met us in the parking lot. The school looked so tiny and not scary at all. It felt very different walking in there with my kids. It had only a momentary affect on me. When I looked down the hallways, my lung filled with heavy air. It smelled the same; I saw my locker when I was a senior. I saw the hallway where my other locker was when I was a freshman. The foreboding left as quickly as it came when I walked into the auditorium. It was where I had been in a beauty pageant. I discovered that pageants were not my type of thing, but I had positive memories of that day. I had memories flood of when I was in choir and my performances.

Eww, and that horrible electric blue dress we all had to wear that one year!

It made me laugh. We sat into the front row and all three kids did great. They sat the entire time and relaxed in the semi-dark to some tunes. Daniel asked a bunch of questions, but he did an amazing job at sitting there and trying to be quiet. He enjoyed himself. During the performance, I noticed that the woman I had talked to about music therapy was there. She recognized me and came up to me afterwards. She said that they have been working on a project to start “Sensory Friendly” concerts. She said, after watching Daniel she knew that it would be a great project to start. We talked for a little bit longer about the summer schedule for music therapy and went on our way.

It was a positive social interaction for me (with a woman) in my old school.

The whole thing was positive. When we were leaving, my dad decided that he wanted a picture of my locker on the way out. Another guy, went by the lockers with his wife and he had the locker next to me. I did not remember him at all so I think he was a couple of years before me, but I am not sure. I am not sure I would remember many faces from my school days. I took a picture of the kids in the hallway to help melt away the past memories of those hallways being filled with negatives.

Their smiling faces consumed them.

I walked out feeling a little more whole than I had before. It felt good. I could finally, look at the building and feel peace. I feel a little teary eyed right now in a strange sort of way. It feels as though I have lost a large chunk of my identity, but that I have gained a large part at the same time. I think I am going to be able to pull out some positive memories from school soon, after all of these negatives ones settle their voices. I knew coming back home was going to be challenging and liberating – I am glad that I am here.

A few resources.

Psychological and Behavioral Impact of Trauma: HIGH SCHOOL STUDENTS

Signs of Trauma in Children

Types of Traumatic Stress

Happy pictures!

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04/28/13

High School Trauma: Road to Recovery I

I had not realized how much school associated trauma affected my emotions and anxieties while dealing with the kids teachers this year. I will get to my high school situation in a moment; however, my reaction about my high school was enhanced due to an interaction with Joshua’s teacher so I need to process it. I experienced bullying from grade school onto my high school in various forms. Many times, my naivety caused my downfall. I would not understand jokes, innuendos, behaviors etc… at the bus stop, on the bus, in the classroom, or out on recess, and that led to being made fun of constantly.

I was made fun of for the “odd” things I said and did.

I was made fun of for my birthmark and my looks in general. The kids made fun of my clothes, my mom, and my home. Others things as well like, how I could not stay quiet or still in class. Similar types of mockery went on through middle school and high school. I did some stupid things because of my naivety. I was clueless at the time, but I wanted to be liked and I wanted to have friends. If people dared me to do something, I would think that would make them like me. It only got me into trouble, made me more of a mockery, confused me, and caused feelings of isolation and depression.

The only group that accepted me was the “rough” crowd for the most part.

[There is just too much to write about.] They made fun of me too, but it was for my innocence and they found it amusing to have a girl in the group who had never kissed, done other “naughty” things, who did not smoke, or drink. Some of those things changed quickly enough. I was still a prude in many ways and it was funny to make fun of me for being that way. In grade school, though I noticed how my teachers did not see me in that light. They treated me as though I was the “bad” kid. I was ignored or I was being disciplined for my disruptive behaviors. I had problems sitting still.

In conduct, I regularly received a U for unsatisfactory.

I could not stop talking. I had problems writing. Art class was torture for me because of all the cutting, drawing, painting, multiple sensory and fine motors issues, and at that time, dealing with abstract art for me was very difficult. (Now I love it.) I was placed in intermediate reading even though at home I was reading encyclopedias, Grimm’s’ Fairy Tales, Aesop’s Fables, and various types of poetry and literature for fun by nine years-old. Though I loved numbers and understood them in a unique way I could not grasp the way they taught it in school and I was placed in basic math. I fell through the cracks.

I was invisible unless I was acting out.

I was sent to the hall many times. I was forced to beat chalkboard erasers to clean them as punishment, which was so painful to me that I would be sick for a couple of days afterwards. The dust made my stomach hurt, it made my nostrils raw, and I coughed for days because the dust seemed to be stuck in my lungs. It dried out my eyes and made them burn. The worst part was that I could not get the residue off my fingers and hands. Even after I would wash them, I could fill the dryness caked to my skin. It was awful!

I have all of that infused to my brain when it comes to teachers.

I especially have the anxiety and fear of not being heard by them. I would get in trouble for acting out and the majority of the time I was acting out because another child was messing with me, or I felt trapped in a desk forced to sit and listen to something that we had already gone over 50 million times! When I would try to explain myself to teachers, they only saw me as being disrespectful, unruly, and obstinate. I had no voice and I finally took on the perception of myself being nothing more than a nuisance. I felt that way at home and at school.

At the beginning of the school year for my kids this year, I had to work through those feelings.

I did not realize it at the time. I assumed it was all my social anxiety, it was a big change, and it was new. I did not know what to expect so I was anxious. I felt much better after talking to Daniel and Ariel’s teacher. I felt all right after speaking to Joshua’s teacher. However, by my next interaction with her I was thrown. I will not go into great detail, but she and I just do not click. I have not been able to find any sort of understanding of her way of communication and it has caused me to spiral into some severe anxiety attacks throughout the school year. Joshua had made several comments in the beginning of the year about her that I assumed were probably his own anxieties.

After a while, though I listened to him.

I think we just do not know how to communicate. Some people you cannot find a way to reach equal communication. I have found it difficult because I get on well with all of Daniel’s teachers and therapists. I have explained to Joshua’s teacher my concerns about his reading issues, yet his academics are excellent. He barely needs me at all for math or science expects to read or write out some words for him. He does great in language arts as well, except he has problems reading the computer screen. He takes a little longer to process his words when reading in general. I am concerned about him having dyslexia and I have sent an email to Daniel’s special ed teacher about getting Joshua evaluated through the school.

It was prompted after my interaction with Joshua’s teacher Friday morning.

I will keep this part short, and in fairness, she has been gone on maternity leave for several weeks. It was her first week back. In a way I am happy that all of it transpired because I also asked about getting Joshua evaluated for Aspergers or ADHD through the school. I am waiting on my psychologist to get him scheduled for an evaluation, but it looks as though it will be the middle of the summer. Daniel’s special ed teacher will be working with Joshua and me for his IEP if he is diagnosed so it does not hurt to ask her questions.

I know I give so many details!

I am trying to stay focused. Because of all that had happened on Friday morning, I was struck with anxiety and fear. I became fearful because I had emailed several questions about Joshua and about Daniel in regards to adding more accommodations to his IEP. I started to become overwhelmed with fears that they all think that I am a bad mother and that I do not do enough for my kids. Then, the thoughts that they feel that I am a helicopter mom and want ALL of these accommodations to make it easy for my kids and myself. I started to panic that Joshua’s teacher would want to retain him despite his high scores and massive improvements that he has made.

The final anxiety blow was about Daniel.

They decided to move him forward to third grade because of how much he has progressed and improved. I started to fear about that, but I had no definitive fear, just a foreboding fear. Those thoughts were consuming my brain and then, the plans for Saturday started meshing in there too. My plans for Saturday started to mix and mingle with my other lingering anxieties. I take the kids to the YMCA so Ariel and Joshua can do gymnastics. I had originally, planned to take Daniel swimming during that time, but now they have scheduled swim lessons. That means we have to wait until Ariel and Joshua are finished then go swimming. I am at the Y for almost three hours. :-/ My dad texted me earlier in the week and said that they were coming for the weekend and wanted to know if they could see us.

Our schedules were not working out.

I found out my niece was going to perform in her choral on Saturday and I thought that would be a great thing to go to, something new for the kids. I was waiting on my sister to tell me the when and where it would be. Ok, so I had all of that anxiety from earlier with the teacher, my general anxiety about family coming and being at the Y for almost three hours, (trying to keep Daniel entertained for an hour) then, my sister texted me the time and that it was going to be at my old high school. My body sunk for a moment. I had a strange response that I cannot articulate. I thought, “Well that sucks.” and moved on.

However, my subconscious self did not move on.

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04/23/13

Are You Calling Me & Other Autistics Sociopaths? (Think About It)

I am going there. I want people to think about what they are saying when they say that Autistics “lack empathy.” I have been over this on my blog, and I have shared a several posts revealing how my son Daniel, who is Autistic, shows and expresses empathy along with myself. Autism and Empathy: Dispelling Myths and Breaking Stereotypes , which Rachel Cohen-Rottenberg Editor and Publisher created, is an entire website featuring many posts and articles sharing truths about Autism and empathy. If you are still under the premise that we as Autistics “lack empathy”, I would suggest going to her website to get a more accurate view.

I want to make a strong impression here because I believe we have enough information now to change the perspective.

However, many still believe that we are unable to feel or express empathy. I blame this on the plethora of literature and media that continue to speak about us, without us. In my opinion, I also feel that society tries to blanket emotions as a whole and generalize them into easy compartments that are only defined by what the “group” is thinking for the moment. Interestingly, some people fail to consider how complex emotions are to each individual. Speaking for myself, I find my emotions too difficult to articulate many times because of the complexity that I feel. I work through them in my creative writings because I am unable to discern immediately what emotions belong to me, and what emotions belong to others.

I can pick up the emotions of others without realizing what I am doing.

It has been confusing for the majority of my life. I become greatly affected by events in people’s life or in media. Much of what Eileen Parker wrote in her post Autism, Empathy and Boston is how I felt. I have managed to express my emotions in the most simplistic of terms much of the time. Happy or sad are pretty much my staple expressions of emotions. Last night my friend Lori shared a wonderful post that helped me understand myself in this area a great deal. Go have a read Accepting Emotional Regulation. I have read a few things now that say in order to have empathy for others it is dependent upon understanding your own feelings.

I understand my feelings very much, it is when others get in the mix that I can become confused.

Here is where I am confused now, how can people not understand the negative associations and misinterpretations about Autistics when they claim these things? When will these negative terms start to dismantle and be edited into better terms and understanding in the books and society? Based upon the history of human existence I feel that it will be longer than, we hope.

However, I DO have hope.

I am relying on the numerous Autistic voices stepping up and sharing how they really think, along with our advocates sharing their perspectives. Still, we have a lot of work to do. Today I am sharing what I feel. I want to express clearly, what it means to me when I hear or read about Autistics lacking empathy. It has been burning in my brain for years. For a while, I believed it. I was so terrified that I was a narcissist that I researched what narcissism was just to be clear.

I did a three part series on the difference between narcissists and Aspergers.

Aspergers – Narcissism: NOT The Same I

Aspergers – Narcissism: NOT The Same II

Aspergers – Narcissism: NOT The Same III

The more I researched the more I believed that Autistics do not fall under the criteria of lacking empathy.

Something that rang through my brain was how everyday people, who are supposed to have the ability to empathize, are the same people who bully. Bullying is a Group Phenomenon − What Does It Mean And Why Does It Matter? The thoughts flooded my brain about instances when I witnessed someone being bullied and I stepped in to stop it while others stood and watched. I felt what that person was feeling and I could not sit back and let it happen. I have done this in school, at church, and at the workplace. Yes, adults bully and they do it at work.

Is this different from empathy in some way?

I think the definition of empathy is loose and left up to each individual. However, when a person with a degree or medical background claims that they have dibs and somehow work it into our societal jargon we are left with their interpretation. It offends me. It hurts me. It annoys me. Mostly, it has been detrimental to my self-esteem. Even if one says, that they did not mean to imply that Autistics are narcissistic or sociopaths the fact of the matter is that being defined as lacking empathy falls under the criteria of narcissism, antisocial personality disorder, as well as psychopaths. These are associated with symptoms of lacking empathy, Autism has been lumped into to that on several resources that I read. They are claiming that we lack the ability to feel another person’s emotions or understand from their perspective, or care?

This has been based upon how we react in situations or what we say?

For instance, instead of emotionally responding instantaneously we start to ask questions that seem inappropriate or we shutdown completely, this is considered showing lack of empathy. For me I may ask questions in order to understand the situation better because in my mind I automatically want to understand and create long lasting helps. I do not do quick fixes. If you are hurt, I want to know the what’s and the why’s to first insure that I was not the cause. If you are excited, I want to know all the details and I mean every detail. Many people just expect you to respond toward them in the way that they would respond.

I do this too.

I still struggle with thinking that people would or should react with empathy toward me the way I expect. That is why I have continued to be baffled at people in general. They will claim that we lack empathy, but they do not try to empathize with our emotions or situations. We are required to be bombarded in sensory assaulting environments and then, if we have a meltdown, shutdown, are cranky, lose our words, or stare blankly we are ruining the fun? If our favorite object breaks or our schedule is suddenly changed, we are supposed to be able to “get a new one” or “get over it” because “it is not that big of a deal.”

Well, those things are a big deal to me and to my son.

To be quite blunt about it by definition, I feel that those who continue to claim that we lack empathy are operating in the very thing I am being accused of.

Let us take a look here.

“Empathy is the capacity to recognize emotions that are being experienced by another sentient or fictional being. One may need to have a certain amount of empathy before being able to experience accurate sympathy or compassion.” ~ Wiki

Simple enough, huh?

I would like people not to be offended at my words, but once again, to be quite blunt, we Autistics are still being labeled and falsely perceived as lacking empathy. My purpose here is to ask you to stop and think just for a moment. Do you truly understand the meaning of empathy? It is a broad definition based upon your perceptions and wants. How you want to be understood is how you expect others to show you empathy. We all need to take a step back and reconsider our expectations. The generalized conceptions about empathy limits us and does not allow room for growth, self or in our society.

Currently, the generalized attitude seems to be that anyone who lacks empathy lacks emotion, feeling, or the ability to care for others.

That attitude would assume that I am a narcissistic, unfeeling, uncaring droid if I were to tell anyone that I am an Aspergers adult. These words shine such a negative light that it puts me on the defense at times. Why? Because it hurts, makes me anxious and fearful. It makes me feel as though I need to defend the way I think and how I process. It makes me feel isolated and misunderstood. It makes me question my actions and constantly try to evaluate what and how I perceive my world. It makes me worry about how people will respond to my son. I have had a lifetime of being told how wrong I am and people telling me how my actions and words are wrong. I have had to filter through all of that and learn to accept myself.

I have had to wade through all the negative associations toward Autism for my son and myself.

What I do not understand is why people are so quick to assume the negatives about autism. Why are so many people unwilling to use positive lingo instead of painting all of us as dismal way of being. I do not run from the fact that there are great challenges. I live them daily with my son and myself. Some days it is extremely difficult, but I ask how can it get any better when we have to face a world that looks at us with negative eyes. Does the world truly think that we are sociopaths? Do people really believe that we are like robots without emotions? Are we such difficult creatures that we have to be explained in terms as being broken? Is the way we process our world so incredibly awful that all energies must be projected into finding ways to make us more like the general public?

News flash, the general public is hurting.

There are people suffering from all sorts of physical, mental, and emotional issues. Many have no one to empathize with them about their disability, their depression, their anxiety, their fears, their “disorders,” or hurts. There is no one stepping up and saying, “I feel you, let me help.” Many of them are like me, reaching out through the internet because no-one-else in their life understands. These souls reaching out to find others who know what the hell they are feeling and talking about.

Think about it.

If you are reading this, have you stepped into my shoes for a moment? We are being told repeatedly that we need to understand how your world works. It is being demanded that we learn your system that is foreign and difficult for us to understand. We are being requested to change the way we think, respond, and express. BUT people fail to see how hard we have been trying to do just that. We have tried to fit in, belong, understand, be accepted, study and figure out this system of humanity that makes us feel like aliens on our own planet.

There are many reasons why an Autistic person reacts in the way that they do.

Maybe the next time you feel as though the Autistic person is showing a lack of empathy, how about you step back for a moment and ask them directly and clearly, what they are doing. Do not ask broad generalized questions, or tell them that they do not understand. Ask them point-blank “What are you thinking in this moment?” However, if you do be prepared for the possibilities of the most foreign thought you could think of, but know that whatever they are thinking could be a great riddle to solve. It could lead to a grand answer of them expressing such empathy that you would never have imagined. It could happen. You could be hammered with a bunch of questions that could lead to surprising helps that you never would have considered.

You could end up with silence and them walking away.

And the next day their favorite stuffed animal or pair of headphones on your desk. You just never know what exciting empathetic gifts could be given to you. I will share several links to my posts in regards to how Daniel has expressed empathy. I will also, share one trying to express how I do by asking questions. I am going to share several other posts from others as well. I hope that I make sense in this post. It is coming from a slight offense, even though I tried not to be negative. I still, do have my opinion and feelings about this. I respect everyone’s journey and their times that they need to vent. I do not judge condemn, or speak ill of them. I work through my own emotional response and trust in the process of everyone’s journey.

However, I think people need to start critically thinking about what they are saying to an entire population that has been ignored far too long.

Positives About My Autistic Son

“I Do Not Understand”

Come On! Enough With The “Lacking Empathy”

“What Is The Cat Feeling?”

My Autistic Son Comforted Me Today

Daniel, Me & Empathy

Things that I read.

How I Experience Empathy

Autism, empathy, and violence: One of these things doesn’t belong here

Empathy, Mindblindness, and Theory of Mind (Sharing this one again!)

A Radical New Autism Theory (Radical??)

How to Test Your Empathy

It’s Hard to Live with Someone Who Lacks Empathy

Empathy

10 things not to say to someone with Asperger’s

How to Relate to Someone who Has Asperger’s Syndrome

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04/18/13

Family (Dys)Functions

A couple of weeks ago, some of my family threw me a birthday party. Many things went well and I did have a great time. There are certain things that my family thinks is funny to do. One is doing things like getting me a princess crown for my birthday and making me wear it. They know how much I do not like crowns or girly type of things like, PINK anything! Lol!

Or lots of hugging!

I do admit, that I have felt more comfortable hugging them in the last month due to changes in them and me. In the past, I was unsure if they were being mean, joking, or just plain insensitive. I now understand that many things that are done are simply because it has always been done. My dad’s side of the family grew up picking on each other and tormenting each other. They bullied each other. (There is a LONG history that goes into the why’s.)

They played tricks and spoke things that apparently some siblings do.

My mom grew up being picked on and tormented by her father’s family. My grandfather was sometimes the cruelest man I ever laid eyes on then, in the next moment he could be sweet as honey. I was confused by the mocking and picking on from both sides my entire life. It makes me sick to witness such things; it was detrimental to my mental state when I was the focus of mockery. I soaked in every word believing them to be true. My confusion would heighten when I would address it, and ask why they would say or do such mean things.

I was told it was “a joke.”

Why wouldn’t I think it was funny if a family member made fun of the way I ate, or laughed? Why didn’t I find it amusing if they made fun of the clothes I wore, what color my hair was, if I did not understand a joke and asked what they meant? Why wouldn’t I laugh it off if they called me a “spaz” or “dingy.” Why would I get my feelings hurt and feel horrible about myself when I was around them? I understood recently, that these things were not about me. I also, took note that on both sides of my family they did not do it to me as much as they did it to one another. I noticed that they made fun of all of their own quirks, sensory issues, obsessions, etc… as well.

The difference that I understood about myself was that I did not do that.

Throughout my life, I did not mock my oddities or myself until someone else started mocking me, or mocked their own that were similar to mine. I believe I have shared some this before. I did not tear apart my appearance until someone else started doing it to theirs, or nit-picked at my appearance. I did not feel badly about myself until someone made me feel as though I should. I did not see myself as being “wrong” or “flawed” until others implied it through their jokes and mockery, of either themselves or me. Once the self-deprecation and negative self-talk would start out of others mouths, I began to mirror. My mom did this constantly, she has gotten much better at stopping, but I grew up with it. After years of this, from my mom onto virtually every family member, I took on the script of self-deprecation.

I already had this realization a while ago.

However, what I am writing about now is how this no longer affects me in the way that it used. I understand that I mirrored that behavior in order to protect myself. I did it with my classmates, friends, significant others, co-workers, and family. I did it first so that they could not do it to me. This was learned. I watched my family become hurt or upset at the words or actions that other family members inflicted. I also, observed that their defense was to counter attack with another “joke” or “put down in a loving way” (sometimes not so loving) toward the person who started it. There were many innuendos and slides that I did not understand.

I did not catch many that were directed toward me.

I was either oblivious (still am) or it confused me so much that I would shutdown. None of this would catch up with me until hours sometimes days later. I understand that this family dynamic is most likely never going to change. The digs and jokes are their way of showing affection as well as indirectly speaking unpleasantries to each other. I have learned that many people communicate like that – I still do not get it. My mom and sisters do this with each other too. I find it all odd because it hurts me when these things are said or done. As I was thinking about this more, I realized that lately my family has been doing this even lesser than before.

I am grateful.

I think that the reason is that I have been so vocal about my confusion with these things and that I shared with them how I no longer had any idea if any of them loved me. That was the truth. I felt so unlovable and so broken that the thought of anyone loving me seemed impossible. I was also, so confused by the social dynamics in my family that I could not filter through their words or actions properly. They have stepped up and have tried to keep reminding me that I am loved and that I matter.

I hate the fact that I need this validation because it makes me feel weak.

That is a whole other issue, about me wanting to be independent and never needing or wanting anyone. I have observed in my family that only the weakest links share their emotions or express their need for validation. It is indirect and eluded to, but it is there. Several things have helped me to let some of that fear go. The changes that my family has made has helped, my uncle sharing with me on a facebook comment that he was diagnosed with depression and got help, and me remembering that I do not think that my quirks, oddities, or the way that I think is wrong.

I do not feel wrong.

I cannot change a person’s perspective about how I respond to things. I cannot change how people think about me as a person. I cannot change how people perceive my “Autismness.” What I can do is be honest and share what hurts me. I can tell people that I am not broken, I am considered disabled, and I do have many challenges, but I also have many strengths. This TED video Aimee Mullins: The opportunity of adversity, I have watched several times now to help me process the word “disabled” and society’s perceptions.

I find myself in a limbo type state of understanding my own disabilities, but not feeling disabled. (That I am still pondering.)

I have had to go through a process of self-acceptance, especially with discovering that I am Autistic. I am still unable to share with many family members because I do not feel that they will be able to accept it. It is not because they do not love me, but because it is a hard to grasp. It is difficult to process that the person you have perceived one way your entire life is not that way at all.

They are not thinking like you in the slightest.

The way they interpret the world is so vastly different that you are unable to comprehend it in the least bit. There are also the revelations of all the times you have hurt them or damaged their psyche without even knowing it. I would think that those who care for you would be heartbroken if they discovered that their actions and words contributed to PTSD. I have gone through my revelations of how my actions and words have been misinterpreted causing pain to my family.

Granted all I can do is move forward and little by little explain how I think and why I do the things, I do.

That opportunity would never have opened up had I not shared the severe pain and isolation I was feeling. I took a chance because I had reached the point of despair. I no longer had anything to lose. I knew that I had to reach out and if I was rejected then, I knew! It was a choice of moving on without them or moving forward with them. I am thankful that my family is trying and they are accepting me where I am, but I am in control of what and when I share. I am determining what is healthy to share for me not because of them. (I hope that makes sense.)

I may be able to share that I am Autistic one day with them.

However, I realize that my attitude before was too abrasive and demanding. I expected them to change immediately with my sudden changes. I went through many stages of feeling hurt and rejected by the ways they have responded toward Daniel. When I finally, accepted and understood I expected them to do the same. People do not work like that. They do not accept differences and changes instantaneously. They do not change their wording from “wrong” to “right” in a day. They will not see “disabilities” in a positive way the second someone says, “Society needs to change.”

Changing minds and perspectives is a gradual movement.

It happens little by little, those who change their mind rapidly normally have not built a strong foundation for their own thoughts. They usually sway with whatever the new perspective is in the moment. Whatever facebook or Twitter is telling them today is what they believe and fight for. In the last month, what I have noticed in the home front is my family being more open to listen about Daniel. They have been more accepting of his behaviors and interacting with him more comfortably. They have not been looking at him in the distance, but they have not been pressuring him to interact either.

All of this has made me feel more comfortable and not on the defense.

I have dropped my expectations of wanting my family to accept that I am Autistic. I feel as though since, my defenses have gone down they have become more accepting of him. Is it my perceptions changing or theirs? I think it is a little of both. My thoughts about all of this has given me even more reason to believe that the way we can change the perceptions of Autism is to find the bridges to communicate.

It requires breaking down defenses and being open-minded.

It is hard to find that balance. It is hard for me not to get offended when I hear negative words used to describe Autism. It is hard for me to try to be compassionate toward people who speak about Autistics as though we are broken, wrong, and/or disabled. It is hard to keep a positive image of myself when these things are said about me and generalized over Autistics. It is reality, people still feel that way because we live in a word that needs labels, distinctions, “us vs. them,” normal and not normal even though neither can be accurately defined.

I still see a world that requires a wrong or right.

Until we can all accept the gray areas, it will always be here. All we can do is impact as much as we can in our space on earth allotted to us and be satisfied that we have done our part. I am slowly changing the dysfunctions that were ingrained into me growing up. I am picking them out piece-by-piece and making dramatic changes in myself.

I no longer fear going to family events.

I no longer feel the need to push understanding on them. I no longer feel afraid that I will fall into mirroring self-destructive behaviors when being around them. I no longer fear that they will hurt me. I see with clarity that all of my fears and defenses caused me more harm than, they did.

I know who I am in this moment. (I will reach some other level of me later, I presume. )

I am accepting myself more each day. Their support and validation has helped a great deal, but I could not have gotten to this place without doing the work in myself first. Families all have their dysfunctions, but they do not have to control or define who we are. Something that I have learned in a new light is that I CAN create my own healing even in the midst of dysfunction. I did not think that was possible before, I thought I needed to escape or isolate, but I do not.

I have the strength to change even when others around me may not be.

It is not always easy; there are some people who have to be distanced or even cut out of your life. That decision has to be based on how toxic they are to you and your mental state. There is nothing wrong with getting away from toxic relationships. However, if their most damning of torture is to make you wear a princess crown on your birthday, I think they can stick around.

Some pictures of the event.

[Show as slideshow]

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04/9/13

Peace? (& Ramblings I suppose …)

(I wrote this yesterday, but I did not get a chance to read it over until today. It is not real time! Aaa! I have no idea why I have to share that, I just do. )

I could go into so many directions with this post, even as I write I am not exactly sure where I am going. Today is a very odd “vibe” feeling kind of day. I feel good, in a way I guess I could describe it happy, but I do not feel emotions the way others describe them so I suppose it is an Angel Happy. It is a much better feeling than, months ago when I was only able to feel happy-sad at the same time. I have managed to separate the two in some way. However, I do feel on the verge of anxiety and a bit of sadness, but I think the anxiety is triggering the sadness.

The morning started really great.

I then, had an interaction with David that was not bad or anything but, it is something that happens quite often. He speaks as if he knows information on a topic that I know full well he does not because I have researched and know more about the accurate data than, he. When I say anything, he gets frustrated and I get frustrated because he adds information into the mix that I never said and I have no idea where it comes from.

It really was no big deal, but my mind could not let it go.

I knew that it was nothing to make an issue out of, but it is something that has personally happened to me AND I have researched it. The topic was stalking. Many people are unaware of the issues of stalking or the dangers. I did not understand that my own experience with having a stalker contributed to my PTSD symptoms.

I did not even realize I was being stalked!

I knew that the behaviors of the individual were freaky and made me scared, on edge, paranoid, and angry, but I did not understand that I was being stalked. An ex-boyfriend stalked me for several years and later his unstable girlfriend turned into wife, who thought I “wanted her man”, stalked me. I think she understood after I looked her into the face and said, “I don’t want anything to do with him and you shouldn’t either. He is a liar, abuser, and womanizer who will never stop.” She stayed with him; I have no idea what has happened since then. (It was around 1997, I believe.)

I feel it is an important issue so I will link to several other resources about stalking below.

And because I have had such a hard time letting it go (from my conversation with David) here are some statistics. I will also address that April is Sexual Assault Awareness Month, as well as Parkinson’s Awareness Month. (I am linking to a blog friend of mine who is an amazing artist and is diagnosed with PD.) The theme for Sexual Assault Awareness Month campaign is “It’s time to talk about it.” (Talk early, talk often. Prevent Sexual Violence.) I am not ready to talk about things openly. I will when I am ready, but it may not be through this blog. I do not know and I do not have to know. Oops, I may have deviated into another chunk of thought…

Wait, if you would like to be caught up on all the awareness that goes on each month go here List of commemorative months.

I am mind jumping back to my earlier conversation. After the interaction, I felt a bit; scratchy is the best I can describe. I felt off and in my mind, I had to say several things to finally be able to move on. Such as, “You are aware that I never said, 1 in 5. Those words never came out of me. You do know that right?” He just looked at me and laughed and said, “You are still stuck on that.” I have a sneaky suspicion that he knew I would be stuck. :-/ Anyway, I moved on from that and knew that it was not that big of deal. Then, I went to Facebook still feeling chipper, but a little off.

I started to feel VERY off.

I can see a clear pattern in myself when I go onto facebook when feeling shaky and on the verge of anxiety. I start to notice things that may or may not be true and even if they are WHO CARES! Why, does it bother me? It doesn’t unless I am feeling off. I do not even notice it until I am feeling off. I have been incredibly social; I just had a great time with my family (which I plan to write about later) on Saturday. I had a great spring break with the kids. I completed my fourth poetry book, which is a huge goal I had, I accomplished many goals I set out to on a personal level and for my kids, AND I cleaned the house yesterday.

I think my mind may have a lot to process.

I went blank when I read a question that was asked by Sam Craft at Everyday Aspergers, “When are you most at peace?” I went blank. I looked outside at my yard and thought, “I never feel at peace.” I feel still and like now calm, focused, positive, optimistic, goal-orientated, but I do not feel peace. What does peace even feel like? I do not know. However, as I read some of the comments that people shared it occurred to me I feel somewhat of what they describe when I write. When I write poetry, stories, or even now. I feel complete, calm, whole, and right, it feels like fluidity and natural within my body. I also feel that way at certain times when dancing or exercising, but mostly when I write.

I have found my peace, and I can feel my anxieties slowly passing as I type.

I was not feeling that when I sat here to type out whatever felt like flowing out of my fingertips. I guess, that is why I sat to write. I am on a positive stretch and I want to stay there. I do not want to be consumed with needless anxiety. I do not want to lose the mind balance that I have been able to maintain for the last few weeks.

The kids and I are having some really great days.

I do not want to let some slight misunderstanding or my perceived actions of others on social media to disrupt that. It has been a rough several years, it has been a very challenging couple of years, things are starting to look brighter, and I want to remember that. Anxiety can distort the mind in so many ways, depression does as well, and negative thinking can be anchor into both of them.

I feel like a buoy surrounded by clear water for the first time in a long and I do not want to stop be-popping soaking in the sun!

I know that the links that I am sharing do not have a jolly type of theme, but it needs to be talked about. I find joy in the fact that I am a survivor. I am alive and I am not bound by fears from my abusers or stalkers. Does it stir up fears, you betcha! But they do not bind me and I feel great success in how much I have overcome. I feel very positive, hopeful with my continued progress, and healing. I find comfort and hope in other survivors and their stories when I am not so fragile to be able to read them. If you are in a healthy place and able to share your story, please do. You can help countless faceless people like me!

Here, here to strength, endurance, positivity, and the survivors from all sorts of tragedy who share their stories!

I do not feel so sad now, but I did realize that some of that sad feeling was triggered by the realization that I felt that the conversation this morning reflected that many people do not think about stalking, abuse, bullying, Autism disabilities, neurological disorders, mental illness, cancer, disease, etc … and so on. They assume they know the facts and when they encounter someone who not only has lived it, but has also done the “homework” they still do not listen.

This really had nothing to do with David and our conversation.

It had to do with the fact that people assume a lot of things until it happens to them and then, they realize how much misinformation they have been fed by media and people in their circles. We all have to filter through voices, influences, our faulty beliefs, and seek what is true and what is not. We have to be critical thinkers for ourselves and be compassionate human beings in the process. Well, I will try anyway.

Links in no particular order.

Stalking

Stalking Resource Center

Stalking Awareness

Help for Victims

RAINN

Child Sexual Abuse Prevention Information Packet

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