Tag Archives: empathy

Processing Thoughts About Synesthesia

I have written several posts on here and on another one of my blogs that I do not share so openly – it is a blog where I tend to process and do mind dumps with my emotions through music and “in the moment” poetry. Synesthesia is one of my special interests that comes and goes. Mostly because sometimes I just cannot handle my synesthesia – I like to pretend it’s all sensory processing dysfunction or something. I have been quite curious about synesthesia because once I discovered that I was a synesthete it gave me more answers as to why my brain responds, processes, and creates the way that it does. There seems to be a correlation with Autism and synaesthesia. Many people are not familiar with the term synaesthesia. I have found if they are they tend to think of it as some uncommon phenomenon.

I have seen movies and shows where they sensationalize and create this feeling of “super hero” type of persona. 

The more research being done the more they have found that  synaesthesia is not so uncommon. My personal opinion, solely based on my experience, is that I believe there are many people with synaesthesic traits, but it is so “normal” to them that they are unaware that others do not see, feel, and/or hear – experience the world any different. I had no idea that not everyone saw music. I did know of certain things that others did not see or do, such as personifying words, numbers, and colors. I learned early on that people do not do that and I attributed it to my overactive imagination.  However, there was another element of me who wanted to keep how I saw the world and my sensory experiences hidden from others and that is, it was my private world. No one could enter and it was my escape from the realities of the painful world that I lived in.

There was a catch-22 though; my internal world was filled with painful memories that would replay with every sensory trigger.

It was my place of solace and my place of tumultuous pain, BUT I was in control of hiding that pain. I could filter it through my colorful world and no one else could be apart of it.  I had to go there to escape, but my escape was filled with reoccurring obsessive thoughts. I suppose it would be wise to explain to those who are unaware of synesthesia to give a definition so there is some understanding.

Synaesthesia is a neurological condition in which stimuli of one sensory modality evoke experiences in another modality. This is thought to occur as a result of  insufficient “pruning” during development, so that most of the pathways connecting parts of the brain mediating the different senses remain in place instead of being eliminated. Consequently, there is too much cross-talk between sensory systems, such that activation of one sensory pathway leads simultaneously to activity in another.

Once believed to be extremely rare, synaesthesia is now thought to be relatively common. The cross-modal connections implicated in the condition are present in all of us, to a greater or lesser extent. Thus, some researchers argue that we all experience synaesthesia-like sensations to some degree, but that these sensations are particularly intense in only some individuals.” ~ Tactile-emotion synaesthesia

I happen to be one of those people whose sensory “wires” are crossed in multiple ways.

I do not have one form of synesthesia; I have them all in some sort of fashion. (synesthesia forms - Synesthesia (Wikipedia) My most prominent ones being, grapheme → color synesthesia, letters or numbers are perceived as inherently colored, while in ordinal linguistic personification, numbers, days of the week and months of the year evoke personalities.” (Wiki) My emotions are heavily linked to smells, colors, numbers, sounds, words, etc … that are intertwined with memories – good and bad. I read this post Emotion-Color Synesthesia Examples in Song, at the end was the song Yellow by Coldplay. It is one of my favorite songs and one that induces the feeling of first love and heartbreak at the same time. When I listen to the song it unleashes feelings of being deeply wounded, but the color yellow means beauty, safe, pleasure, and delight for me. (among other positive words)

The person who wrote the post said,“Unrequited love is yellow, folks.”

My thought when I read that was, you are absolutely right! I realized that yellow was now a confusing emotion for me. It became complex and that explained why I could not have any sort of yellow in my life for several years now. I feel the emotions of colors when I wear them that is why I tend to wear solid neutral or dark colors. Bright colors make me feel anxious. I can wear certain light blues or certain patterns, but I have to be in the right frame of mind. If I wear particular colors it makes me more susceptible to absorbing other people’s emotions. I see numbers and colors around certain people too. (Numbers?) I do not consider it auras though some may believe that I can read auras. I think of it not as the person, but the color with the personality. The color or lack of color can tell me if the person is safe or not.

Many words have personality, emotion, and colors – I see them dance.

They talk to me and manifest through visual movies from words to images and vice versa. The words are alive and when they are spoken to me by others I can feel the softness of them or the daggering attacks physically. I usually (not always of course, I am human) know when someone is speaking falsely because of how the words feel against my flesh or through my body. They have weight. I know that can sound insane, but it is how my brain processes. My flesh feels words and emotions. My poetry and stories at times, come from emotions that are either absorbed from words that have been spoken to me or that I have read. I feel the emotions through people’s words, at times; I can distinguish intent. I have lost some of this ability due to self-doubt and when I have gotten too confused (emotionally or socially) to discern correctly. I do not rely solely on my abilities because I know that I can quickly become confused and my mind full of chaos from sensory overload and emotional chaos.

I can experience emotional chaos and it triggers all sorts of sensory overlap.

It intensifies my anxiety and I believe at times my anxiety is due to synesthetic bombardment. When I was a child my way of coping with life was through fantasy. My synesthesia allowed me to live in an Alice in Wonderland type of life. This transitioned into my adult life, however; as I grew older I understood that I could not live in my fantasy world as much as I longed to. It was still my way of escape, when I became a Christian the types of spiritual environments that I was in encouraged to some extent these fantasies that I could translate into spiritual dynamics. I do not dismiss the spiritual realm, but I no longer entertain everything as reality. If that makes sense. I know how I am capable of falling into a fantasy world and over the years with my short story blog and my poetry blog I have learned how to differentiate and write out my thoughts in creative expression. It feels absolutely real. I am there. I am with the person I am thinking of – I am with my characters or dancing on the Milky Way.

I feel every sensation and when I am in the moment this world feels less real and the one that is escaping through my fingers feels like reality.

I did not understand that before, my imagination and how I experienced the world scared me. When I slowly started to share some of what I actually experience with synesthesia David and my mom responded in the same way that others had, it just sounds freaky. However, through that my mom and I discovered her own form of synesthesia. She is a painter and I am a writer – we experience it differently. People have accused me of being on LSD when I explained to them how I felt the trees, saw the leaves with tracers, witnessed the sparkles of flower pedals as the breeze caught them and the breeze was a gentle man! Who says that? I do, and time and time again I caught myself saying such things believing that others too saw it. Then, I was quickly reminded that indeed they did not feel the earth and the things all around as I did. I do think that more people experience these types of things, but have never sat down and thought about it.

Or they have done what I did in the past, ignored it.

I stifled it; I pretended that it was not happening. I told myself that I was making things up. I attributed some of the things to dyslexia and possibly it is that too. There could be other learning challenges as well that contribute, but where does one thing begin and another end? I have no answer. I do not know of dyslexics tasting the color of the word clink (it is kind of rusty tasting, but it flashes silver) or hearing the color red pounce out of the number five. Or maybe … they haven’t talked about it? I see shadows that others do not see, are they ghosts, and spirits? I do not know. I do not dismiss any and everything without much thought and musing. I have changed my mind over the years so nothing is set in stone. I am skeptical, but open-minded after learning about Autism, SPD, synesthesia, and the multiplex of neurological information we know and do not know I feel that there are many things that will never be answered – quite possibly it is better that way, coming from a person who freaks out without answers? Who am I? ;-) (baby steps)

I am writing about this because I have gained new insight as to how my synesthesia has affected my trauma.

It is a factor in my PTSD episodes. My synesthesia can be triggered by one word and that word unleashes memories, not only emotional, but sensory memories. It causes a domino effect in my brain which, releases visuals, sounds, colors, dates, numbers, people, smells, songs, dreams, all sorts of things manifest and connect. They connect and wrestle their way into my real time making it challenging to distinguish between now and then. I have managed to work through much of this and I now know when I can and cannot listen to music or read certain things. However, I have not gotten any sort of grasp on this when it comes to relationships, especially romantic ones. My sensory challenges make it difficult for me to touch. I feel overcome with people’s emotions and it feels like they are seeping into my skin. I can be affectionate when I do not feel like it is expected of me or that someone is trying to get something from me. I do not like being touched because it hurts, at times it feels violating, it is awkward, and /or it is too much to process emotionally and sensory wise.

It does not mean that I never want to hug people, I do.

It just depends on many things. I used to think that it was only because of sensory processing dysfunction or that there was something else wrong with me – maybe I am just a jerk who hates being touched. No, that is not true. I think touching, looking at people, interacting in ways that many people do is just too much for my mind to process. I can do it in small doses, one-on-one, and with baby steps, but not always. My mind is consuming information at rapid speed; it is unable to determine what is useful and what is not. It is processing emotions, colors, sounds, ideas, words, and images. While it is doing that it is connecting, comparing, organizing data, computing, and analyzing my environment. I am able to make more sense of my world by understanding how my synesthesia and being Autistic enhance and challenge my daily life.

I believe that my overlapping senses have been a source of many things that I had not considered before.

I feel that my synesthesia affects how I interpret communication and emotions. I think it may also, contribute to my social confusion. My intense sensory and memory recall can spiral me into confusion, anxiety, depression, and negative thinking patterns. This stems from a lifelong misunderstanding of my gifts and challenges. Synesthesia is definitely, one that can make you feel like an outcast and cause one to see the world very different from others – intermingled with Autism, but looking and acting “passable normal” makes for a complex life. I learned to mask and hide many of my Autistic traits and I learned to do the same with synesthesia. When I think about it I feel a hint of shame when I talk about it. I do not know why and I would like that feeling to disappear. I have no reason to feel ashamed of who I am or for the way my brain processes.

I have a lot to share on this topic.

I have another post that I am working on as well and talk a little more about fantasy prone personality and my experience, it ties into my synesthsia as well. I am still researching to see if I can find information about those who have been abused and who are also synaesthetes. I would like to know how that affects those of us who have been abused. I feel that it causes me to relive PTSD episodes in extreme ways, but I am not sure if that is true or not. Any information would be great if anyone knows of resources please send them my way. Thanks!

A few of my posts.

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My Top 10 Posts for 2013 & Then Some …

As I have been trying to look back through the past year, I became overcome with emotion from 2012 into 2013. It was a rough time for me, we had a long stretch of rough times, but it all caught up with me by the beginning of 2013. I have a post that I am working on – trying to polish it up so it will not be so raw. I do not mind sharing when it comes to me, but I need to be a little more sensitive. I want to be sure I do not sound too harsh or something and that I am articulating what I mean to before I share with others. While pondering, I looked at my stats to see what my top 10 posts were for 2013 and overall since 2009. I found it interesting the most popular did not always get the most “likes.” However, I was also surprised at the amount of “likes” that some did receive, I had no idea.

I thought the numbers of visits on each one was interesting too because, I like numbers! 

I was intrigued to see how many ended on even or odd numbers and what they equaled when added together … it was a fun way to stim as I still recover from all of the socializing I did this week. Last night, my dad came for dinner and it was a pleasant evening. I was a little taken aback at how much Daniel attached to my dad. He was very sad when it was time for him to go and as my dad was standing at the door still talking getting ready to head out; Daniel sat there staring at him with the sweetest smile and sadness in his eyes simultaneously. In a way, I felt my heart break because I too have felt that same feeling. I bent over to comfort Daniel and tell him that he would see papaw again when he came back to town the next time. Daniel told me, “I love him so, so much.” Sigh … I am not sure what emotions I am feeling with all of that.

I digress! I shall get back to my point; here are the Top 10 Posts for 2013!

  1. Fear-Anxiety-Stress-Autism I
  2. “I Was Not Raised To Say Good Morning!”
  3. High School Trauma: Road to Recovery I
  4. Autism Cannot Be Blamed for Everything
  5. A Look At Criticism & Negative Self-Talk
  6. My Inevitable Meltdown
  7. I Did Not Expect That
  8. Double, Double Toil and Trouble
  9. Autism & Wandering: My Child & Me
  10. Gifted? What Is That All About?

And here are the Top 5 since 2009! 

  1. Daniel, Me & Empathy
  2. Bringing Awareness, I Am Turning Blue
  3. My Autistic Son Comforted Me Today
  4. I Tried…
  5. Are You Calling Me & Other Autistics Sociopaths? (Think About It)

Well, there is a lot to read.

I am a little shocked at how much I actually have written and how much we all have changed over the years. I hope some of these posts will be beneficial to others. If anything it helps me to see many things that I have worked through on a personal level. I did not edit any of these – my brain is too jumbled at the moment. :-) I would end here, but I wanted to share one of my favorite posts from June 2011 it was a monumental post for me because I started to reclaim parts of me that I had tucked away for years and years. It sparked my desires to write and share my poetry that was more creative and “real” so to speak. It triggered a new openness in my fictional writing and my desire to try to capture the imagination I would not allow out for so long. By allowing myself to paint it opened up more of my way of expression and creativity and reminded me how much the Number 8 & Infinity means to me.

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I Don’t Have A “Bestie”

I will forewarn you this post is a processing post that is filled with a culmination of my lifetime of confusion and hurt about relationships. It was spawned from a web of thoughts connected by my longing for a person that I believed existed. A person that I thought was out there who understood me, who one day I would find and pieces of me would finally make sense. I thought that they would help me understand me because we would “know” one another and just “fit.” I have been pondering these thoughts for months. I have been analyzing, researching, rethinking, and dissecting what unconditional love is supposed to mean. I am sure that this post is going to manifest into several as I make connections, but I am tackling this “bestie” thing today. Bestie or better known as best friend is something that I do not have in my life. If I did I would never call them my bestie unless it was in some sort of mocking way. :-)

I do not usually use words like “bestie” “BFF,” or “fav person.”

The concept of best makes me automatically feel as if there is some sort of completion. This person is better than you no matter what – they are the best. I understand that best applies to their connection and their relationship, but in my experience, a person who tells me this is their best friend is setting a boundary and telling me that no one will ever measure up and no one can contribute anything to the dynamic of the relationship. No matter what, everyone else is out. As far as I know no one considers me their best friend, they may consider me their good friend, but no one has said that I am their “best friend.” I do make a very good friend – I do not know if I could be a best friend. Not in the way that I perceive people being best friends anyway. These thoughts and realizations have become clearer to me in the last few weeks when I have witnessed pictures and all of the verbal and physical affections poured out to others.

It triggered my painful experiences with friendships.

It triggered my confusion about people saying that their best friend is their husband, their mother, their sibling, or someone that they immediately connected with. Why does it feel like everyone around me has that one person? They seem to have that person that they can confide in, share with, have private jokes with, be happy with, but I am the foreigner who cannot? What is so wrong with me that I cannot have that type of connection? Is there anything wrong with me? Do others know what I am talking about and share in this pain as an onlooker of relationship connection? There are some days when these thoughts never cross my mind. I do not think there is anything wrong with me per se. I admit I do tend to have a different perspective about my relationships than the other person. I will think nothing is wrong or that we are still connected until I realize that they have not contacted me in a long time and I see them socializing or interacting with others, but not me.

I can be perfectly content and think that I have some sort friendship and connection.

Then, I realize that what I think the relationship is and what the person thinks about the relationship are two different things. My mind then, goes into a state of confusion, chaos, and anxiety and I frantically try to understand – are we friends or not??? Just tell me! I have a similar problem with family. For instance, I see my aunt every week at the Y. We converse a little here and there on fb. However, I am not included in her life. For me, she is the closest thing I have to a close friend in real life, but I do not get invited to go places with her and I normally only get invited to family events. Yet, it has been made clear that her “door is always open” to come over. I cannot simply decide to go over to someone’s house unexpected and randomly. The thought of an open door policy fills me with anxiety. I want to very much be connected and participate, but I do not know how.

Honestly, there are times that I wonder and try to figure out if she is just saying that to make me feel better or if she means it.

In my mind, I question because I am never invited to do other things with her. We share in the working out interest, but she does not invite me to go workout with her when she invites the other people from the same workout groups. I don’t understand it. I am not saying that she has done anything wrong – I am saying I do not understand why she does not think to ask me or offer to participate. Please keep in mind I am processing and there is a lot of emotion trapped into my words mostly because I am confused by people’s behaviors and my own surprise of feeling so deeply hurt. Why am I hurt? Why are these emotions stirring? I hope writing my thoughts will help me. Maybe I should start from my earliest memory of having someone in my life who I considered a best friend.

 bigstock_Paper_Fortune_Teller_86736345The first person was in kindergarten.

I do not recall much other than; I thought the friendship was much more than what she thought. We were friends. We played on the playground together. We sat next to each other. I remember being confused when she would run off with other friends, but not much else. The only other thing I recall was the day that she upset me so terribly that I punched her in the stomach. It was because she would not give me something when she said that she would.

It was one of those paper “fortune teller” things that kids make.

I had never seen one and found it utterly fascinating. I wanted to see how it worked. How was it folded? How many sides were there? What kind of shapes could I find? What were the answers that were hidden AND how did the answers come about? I was so excited – I wanted to see it so badly. She was playing with it and told me to wait my turn, I did. I was being patient, but she was taking too long. I went to the teacher and told on her. The teacher set a time limit and my friend would not give it to me after the time limit was up. She kept it and taunted me putting it close to me then, taking it away. I told her to stop and told her to give it to me. She wouldn’t. I got mad; I punched her in the stomach, and took it running to the other end of the room.  (When I was a kid I had aggressive behaviors if provoked by these types of things that felt unjust. However, when I was bullied physically or verbally I would shutdown. I do not know why.)

I got in a butt load of trouble and was not allowed to play with it.

We were no longer friends. Then, there was my first grade best friend. She and I were together all the time – I have no recollection as to how we became friends. However, she did a similar thing to me on the playground. She was on one of the spring horse things that bounce back and forth. Short version, she would not share – was a brat about it – I started punching her on the back, pulled her off of it, and got on. I got into a butt load of trouble, again. She also, convinced me to steal stickers from the teacher during lunch one day. She said, “If you are really my best friend you will get me stickers.” We got caught, but I was the one with my hands in the desk – I was also, the one with aggressive behavior, lived in a trailer, and had a single mom. Guess who got the blame? Yeppers, yours truly. She was the person I wrote my first poem about.

My first poem was titled “Best Friend” and posed questions about what is a best friend, why do best friends lie and hurt me?

I believe that may have been when I started to create an ideal best friend in my psyche. I did not have best friends throughout elementary school. I had friends and lost them all. I ended up with two “best friends” in my first year of middle school. It was too difficult of a dynamic for me. They were best friends before me then, they befriended me. However, there is always a dynamic of loyalty to one friend and that dynamic can change when it is one-on-one. It also, changes when it is more than one. Girls have so many underlined thoughts, emotions, nonverbal cues, verbal cues, body language, EEEK! There are so many things that I do not catch – things are so hidden between the lines and I miss them or get extremely confused by them. It proved to be too challenging for me in middle school. I wrote a little about those girls in this post Bullies. I made another best friend the next year, however; there was a similar dynamic.

She already had a best friend who lived across town.

I would get confused and hurt every time she wanted to be with her other friend. They shared secrets, other interests, they seemed so much more connected, and I did not fit. Although, that is the same best friend who screwed my boyfriend a few years later that triggered me to try to commit suicide so … then, there was my last and final best friend so to speak. She was my everything. I adored her while everyone else in my life said that she did not care a lick about me. They said that she was using me and took advantage. I really do not know to be honest my perspective is so skewed because I gave her my whole heart. Another short version of the story, she was the cousin of my first boyfriend who I needed to have out of my life completely. At one point she and I had plans for our future that dismantled because she got pregnant, but she got pregnant with someone who was not her boyfriend at the time.

She had a secret life that I did not know about. 

She had friends that I did not know about, she was not the person I thought she was and I was in shock for a very long time. I was in shock and felt abandoned. She was just as shocked with me when I was upset. She could not understand why I would feel the way I did. I felt as if I had been betrayed, I thought I knew her and I did not know her at all. It was devastating. I think it was at that point I looked to men to be my sole “bestie.” I looked to my boyfriends to provide all of my friendship needs, but it did not work for me because I found it difficult to transition daily from romantic love interest to best friend. I could not tell my boyfriend or spouse EVERYTHING that I was thinking. I know because I HAVE and it is never good. Never! It is never good for me to share everything with a best friend either. This is when I started to have tremendous hurt, confusion, and thoughts of just giving up on relationships altogether.

I could not give up though; I continued to try – seeking that one person who finally understood. 

Part of the challenge for me is that I cannot talk to a person every single day. I cannot drop everything that I am doing and be there. I cannot ignore my own interests on a regular basis and be the all consuming emotional support for people. The only way that I am able to devote any large amount of energy on people like that is if they live with me. That is why I had my friends stay with all the time. That is why I moved in with my boyfriends. I needed to be near them or else I could not keep up. There were too many unknowns and what seemed like randomness. They tried to explain to me that I could not know everything. I did not understand I was trying to ease my anxieties and fears of abandonment. I understand now that a good friend does not expect you to drop everything for them. A good friend understands boundaries and respects them. A good friend does not ignore you until they need another emotional fix. The people I acquired as best friends may have been the one person that I shared myself with, but they were not good for me.

I had several friends that I would consider close friends. 

Several of them shared the similar patterns requesting my time and attention when needed, but they had other friends who fulfilled their other needs – the more fun, entertaining, types of things. I am goof ball and I did share in a lot of fun and silliness, but for them it was not the same. I get serious too quickly. I talk about things that people do not want to think about. My goofiness comes and my oddities make them laugh, but it is not the same. We did not share in the same ways as they shared with other friends. I understand that, but it makes for a lonely feeling at times. I never truly feel alone, alone because I am comfortable with myself. I find pleasure in being silly with myself. I make myself laugh all the time. I find creatures to be quite good friends – though the conversations tend to be a bit one-sided.

Those creatures never stop talking about themselves! Kidding!

My lifetime of making and losing friends has been painful. I have not understood and there are days when I get so upset. I ask David, What is so wrong with me that I cannot have any friends like other people have friends? Why can’t I have a best friend to share with? What is it about me that people only want me around at certain times? Why has this happened throughout my entire life? Why doesn’t anyone in my family want to be my friend? Just because I have these thoughts does not necessarily mean I believe them. David and I are both in agreement that according the societies definition of best friend we do not want to be best friends and we do not think that it is healthy for us. We have been the only people in each other’s life for a very long time and have learned that some things just should not be said to your spouse. We do not hold back anything of importance, but fleeting thoughts or emotional processing should not be spewed all over the place without some sort of limitation.

We both have said things to one another that caused unnecessary hurt because we did not understand filters.    

It is a challenge too since, both of us are very direct at times and can lack couth when communicating. I think all of this is spinning in my head because it is time to deal with these hurts and understand some of the causes of these triggers. I do not even know how to make a best friend – most people have one by my age. These triggers are linked to family dynamics as well. I see my family have these friendships and bonds and it hurts. I try to connect and my attempts feel feeble. It feels like if I am not jumping up and down screaming, Hey, look at me! I am here! Pay attention to me! That I am forgotten. This is not true; it just feels like it sometimes. That invisible feeling can distort so much. The fear of being forgotten can consume me. I am not really sure why it matters. My only resolution to that thought is that I have always had the lingering feeling that I really do not exist and the only way that I know I do is if other people confirm it somehow.

Goodness, I have no idea if I am making any sense here!

I find this all so frustrating that I am still struggling with it and relieving to get more of it out. I am not sure if I have any answers, but at least the heaviness, sadness, pain in my heart has decreased. I do think that I have progressed in realizing the ideology that there is one person who will understand me is just that – ideology. If I were to rely on a single person who got me and I spent all of my time devoted to them when would I be challenged to grow and appreciate the uniqueness in others? I also, think that by getting all of this emotional mess out of my head that I can better discern how to see the relationships I do have in my life and appreciate them more. I need to accept my capabilities, my love/affection language, and see how that fits into the relationships I have. So I suppose, this post does have a good purpose.

Thank you for reading if you made it this far here are several things that I read/am reading. 

I apply things that I read about kids to myself too, I wish people would write things about adult Autistics or am I the only one who struggles with the stuff??? 

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Cultivating My Own Support Network

There are people who have had great support from loved ones and friends throughout their life. There are those who have managed to find support to help them, such as finding groups, forums, meetings, organizations, and/or through their religion. I have not had that — my life has been rather lonesome and self-reliant. Though I do not want to say I have not received any support from friends or family, I have. However, it has come at a cost — many times I found that my needs were not actually met. I ended up stuffing my needs out of guilt, shame, or obligation. I had to be ok. I had to get over whatever I was struggling with because others needed more support. Or what I was going through was not “as bad” as what someone else was going through.

It felt as if I was either ignored or that I was on some sort of check list for them, and once they felt I was ok, they could move onto their next thing.

It feels very invalidating and because of this, I’ve grown accustomed to doing things on my own. I had to learn as a child to take care of myself and others. My emotional needs were not a priority to the adults in my life. My basic physical needs were met, but many times accompanied with guilt for needing anything in the first place, unless it was the holidays/birthdays. During those times, I was showered with gifts, but there were also times when I hated getting gifts because I knew that they would only be used against me at some point, if I did something wrong or if I asked for something during the year. I am not sure why I expected more support from my family when we discovered that Daniel was Autistic. I am not really sure what I expected at all, other than wanting to talk to them about it, for them to want to learn about it, and try to understand it along with me.

I did expect for people to listen to me, allow me speak about my concerns, and share in my enthusiasm at discovering answers.

I didn’t get that, mostly I received silence and condemnation from my spiritual community. I felt ignored and isolated. I felt as though Daniel was nonexistent to people. I felt alone and questioned myself on many occasions. What if I haven’t prayed hard enough? What if I wasn’t doing enough good in the world? What if I was causing my son to be Autistic? (Technically, I guess you can say that I caused my son to be Autistic since I am too. ;-)) Why did my family refuse to talk about it? Why did people think it was evil? After years of feeling such tremendous fear and pain, I noticed a pattern: everyone in my life was being consistent — except me. The reality of my life is that I have been my strongest and most consistent emotional supporter. Many of the things that I have accomplished have been done on my own. This does not mean that people have not been there and provided the means, resources, or encouragement, but the main source of support that I have longed for has been emotional support.

That means a person’s time, listening with nonjudgmental ears, an open heart and mind, people who make it clear that what I am feeling and who I am matter.

That comes from relationship and connection – that type of support I have had to provide on my own. It took me understanding that in order to move forward in seeking out how I define and need support. I had to accept and understand myself before I could look to others. I had been doing it my whole life, but I never trusted it. I had this lurking feeling that somehow I was wrong for being able to support myself. I watched as people would have people in their life rally around them and no matter how hard I tried I could not keep friends or have that same connection with my family. I did not know what support looked like for me, but I knew I had not had the same kind of support as I witnessed in social settings. Even if I did receive any sort of emotional support it was invalidated by my confusion of actions/words not being consistent, abusive relationships, and/or constant anxiety and depression.

Many times the things that people did as acts of support I found hurtful.

I am different from many people when seeking emotional support. (or maybe I am not?) I do not want physical hugs, I do not want to be touched, I do not want to hear “I love you”, I do not want to be surrounded by people when I am seeking emotional support. It helps having distance with people for me, but I desire to know that they are there. My goodness what do I want?? How is anyone supposed to know? That is what I am still working on, but I can say that it is important to me to feel validated and heard. I also, grew up living to support other people. I grew up trying to make everyone else happy. If I made sure they were happy then, life was calm. If they were not then, life was chaos. In doing this, I learned that my emotions were less. Throughout my life when I had tried to express my feelings, share the emotions that I was feeling seeking that emotional support I felt invalidated and even felt shame or guilt for feeling them.

I learned over time to stop sharing all together.

I learned to stop trying to ask people for support. My ways were not their ways and I was expected to feel grateful and satisfied with the way they gave me support. When I attempted to share with David I was encountered with similar responses until I finally gave up, as I had done with every person in my life. Again, I found myself relying on me for my emotional support. When I felt too overwhelmed I found myself stuffing my emotional needs. I have done that my whole life too. I have the ability to live long periods of time ignoring my emotions or dismissing them devoting my energy to everyone else around me. However, this is very damaging and the emotions eventually come blasting out through meltdowns or I internally implode into shutdowns. This is another reason why I started a blog; I was desperately seeking support – any support.

I wanted someone to be there and let me know that I was not alone in my feelings. 

Over several months David and I have learned to work on our emotional responses. We understand that they are ok, as long as we are not manipulating or trying to cause harm to the other person. Understanding emotional responses has helped me in my expectations with others. I have more awareness of trying to understand them, I am listening and observing with new insights because I now understand that people react for the most part because of their experiences. In observing people’s emotional responses, I have been able to discern what types of people are good for me to try to establish relationships and those who cannot be in my support network. Before I had allowed everyone in then, I eliminated everyone from my circle; now I am able to see a bit clearer and know that there are some toxic people out there for me. There are people who I connect with and are good for me as well. At some point, I had accepted that I was wrong if I did not fit into the “autism mom” groups. 

I felt wrong if I did not fit in with my fellow Autistics. 

I felt wrong for not fitting into my family. I felt wrong for not having friends. All of that was a motivator that caused me to force myself to try to fit in only to feel even more isolated in midst of people. I am not going to lie, it hurts. Even as I type these words out my heart hurts and tears kind of fill my eyes. However, I need to go through this because it helps me to understand that I cannot just pick anyone to be my emotional support. I cannot have people who do not build into me emotionally and/or siphon me for emotional support — they have no desire to have my kind of support. I have had people come along and help me, love me, hold me up, but not for long and like I said earlier, it usually came with a price. I am thankful for those people, but I had to do the work. I was not able to share with them honestly without consequence.

I sat in silence much of time because:

  1. I did not know what I needed.
  2. I did not know what support actually meant.
  3. I was so used to doing things on my own that I did not think about it.
  4. Past experienced proved time and time again that people only gave me the support they wanted or assumed I needed.
  5. Past experience gave me the perception that if I needed support that I was weak.

There are more reasons, but I think you get the point.

After struggling with feeling so alone with trying to find help for Daniel and trying to understand autism, I gave up on people in my “real” life. I looked to the internet to find others like me. I sought people who understood and appreciated my challenges, pains, and talents. I have slowly built into myself, but much of that came from the positive experiences and acceptance that I have received online. Through my virtual life I have been able to gain a more positive perspective about myself through the life experiences that others have shared and some of the friends that I have made online and continue to make. I know that I can go online and find people who have gone/are going through what I have or similar experiences and that helps me feel connected.

I can only take so many social encounters.

However, by cultivating an online network of people, I feel supported, understood (most of the time), and vulnerable, but the relief that comes from knowing others understand what I am sharing is worthwhile. Even when people do not understand but simply “like” or give a virtual hug or something, it helps. I try to do the same for others and support them as much as I can. I think even if someone does have a strong support network with family and/or friends, they can still have moments of feeling alone and misunderstood. Reading and sharing with our community has been a large part of where I find support.

I am using support in the context of,

1. to give aid or courage to
2. to give approval to (a cause, principle, etc.); subscribe to to support a political candidature
3. to endure with forbearance I will no longer support bad behaviour
4. to give strength to; maintain to support a business

I am thankful for the passion that ripples through and the tenaciousness of the Autism community.

It keeps me motivated to stretch my mind and change for the better. It helps me realize that all of us need support differently. During our Autism journey, we have needed a lot of support financially, physically, and emotionally. People have come and gone who have helped us with each of these. However, I found that I am capable of providing a lot of that support for myself. But I definitely need people in my life and I do need encouragement, reassurance, validation — I still need support. I started to create a support network that fit for me. When things seem to be going downhill and crumbling around me, I have found that being able to go online and to see this network flowing it gives me hope. I do not always communicate directly with people, sometimes reading their words is enough to give me a boost. Then, there are other times when I feel left out and disconnected.

That disconnect has enabled me to see how I can support myself and communicate how I need support from others.

I am still learning, but I am getting better. It is interesting that through this past year when I stopped seeking support or understanding from family that they have slowly started to talk to me about autism. I still do not expect anything, but I am happy that they are not being silent. I no longer feel that Daniel is being ignored. I feel validated at times when they ask me questions and no longer dismiss me or change the subject. I understand that I cannot seek support in the ways that others do. I will not seek out groups anymore — it is not for me. I will not discuss on forums — people can misunderstand so easily. I will not try to be friends with every ASD mom — some may be a good fit and others may not. I will continue to seek support in the ways that suit me. There is nothing wrong with how I need support.

I see with more clarity how to ask for the support I need from the people in my life.

I do not look to others to provide my emotional needs that does not mean that I do not need it. It means that I am better at seeing what emotional needs I have, how I can help myself, and when I need to ask others for their support. I accept what they are capable of giving and that is enough for me. I accept that people need time to process. I think that some of the people who seemed so unsupportive in the beginning were in shock, denial, or were confused and misinformed about autism which, made it difficult for them to know how to respond or support me. I do have hurt and feelings of abandonment, but I am healing and I can understand.

I actually think that overall learning how much I can do on my own has been a real eye-opener.

It has built into my self-esteem and gives me the confidence to keep stepping out trying to achieve things I never considered before. I do not deny that I feel incredibly lonely at times, or that my mind wanders in sad thoughts about not having friends and family like other people do, but maybe it is all about timing. Possibly, I needed to accept myself and learn more about relationships before I could establish real life relationships? We’ll see. Each person has to define their needs and how to actively gain the support they need — some of us need help in learning how to do that. :-)

Related reads: 

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Improving Physical and Emotional Environment II

Continued from Improving Physical and Emotional Environment I

Since I have been able to accept, process, and work through healing from some of my past abuse I have been able to explain to David how words, actions, and behaviors affect me. Before, I was unable to gather words to speak to him. Part of that has to do with his personality, but it also has to do with my inability to know or share what I am feeling or why. This bit of information helped me to understand how much Daniel was feeling unsafe in his environment. Like many things, I had an understanding, but it had not truly registered. Daniel has been unable to communicate his sensory struggles, feelings, triggers, people, and situations that cause him to feel unsafe. He did not feel emotionally safe in his environment for a long time because it has been and still is difficult for him to understand his emotions, our emotions, or reasons for people’s actions.

But the greatest obstacle has been his physical environment.  

I am at an advantage in the sense that I have more experience with emotion and time interacting, observing, and analyzing to create some sort of conclusions about what people are doing and why. He does not have that what other people take for granted such being able to read body language, tone, expressions on faces and applying that to a situation or emotion does not come easily for us. I have practice and I still get confused. He has relied heavily on his physical environment to be a safe place, however; he is extremely sensory sensitive and is dependent upon his routines to bring peace. He can understand his environment and he expects it to be reliable. If it is too stressful of an environment he cannot function. In other houses we have lived in the sensory aspect was too overwhelming which, caused him to be in a constant state of anxiety and “fight or flight” mode.

This hinders anyone’s ability to process information.

It can enhance triggers, sensory sensitivities, induce irrational thinking, feed anxiety and create unrealistic fears. He looked to me to be his stability, his filter, his voice and many times I could figure it out, but not always and my fears, frustrations; exasperation at times did not help. He had looked to me for his nine years on this planet and I have done my best, but some days I have no understanding for him or myself. In order to help with that my mindset changed from feeling like a failure or wrong, to accepting that sometimes the only way to help is to sit in silence bringing as much comfort as possible. That helped change both our physical and emotional environment – acceptance often does.

Last year, when I got to my breaking point and knew that I needed help I realized what an accosting environment we were in. 

I blamed a lot of it on the house we were in; which is not too far off, but it was not the only reason. Around March, something in me changed and I was no longer going to allow myself to fall into the negative loops. I did seek help from my therapist she confirmed that my environment was “unsafe” and that I had to make changes in order to function in a healthy way. I decided that I could no longer allow my environment to feel unsafe – it was destroying me mentally and physically. I finally, came to the conclusion that I had to take control and create a peaceful environment for the kids and myself, as much as I could in the house that we were in. Part of my hindrance was feeling that I was not and could not be in control. Depression, anxiety, and continued PTSD episodes kept me in a state of fear – I could not think straight.

This is where I would like for people to take a moment and ponder, what I am describing is not uncommon for Autistics. 

We can live in a constant state of fear, anxiety, depression, PTSD, heartbreak, trauma’s, etc … and still look as if nothing is wrong. We have learned to adapt, maybe not in the best of ways, but we have found ways to cope and survive in unsafe environments and we still accomplish a great deal of things. I want to express that because in my case people tend to think that since I am not showing certain emotions or talking about them that I am fine. They look at me and think that I have no problems, worries, or struggles while I sit and whither in excruciating isolation, fears, anxieties, and pain silently before their eyes. If I do not feel safe I cannot talk or show my emotions – I shutdown.

I would venture to say that many people can empathize with what I just wrote, Autistic or not …

Much of my ability to change came from applying mindfulness each day and getting out to exercise. Some days I was swallowed up in fears and anxieties, but over time I have been able to take control by reminding myself to “stay in the present”. I try to do this daily so my mind will not wander into the past or the future looping into anxiety. It has helped me a great deal, but I will always struggle with my looping, persevering, and yes, at times fixated mind. :-) Because I changed my thinking from fretting about what I felt I could not do to looking at what I could do in the now - it helped me to help myself. By doing so, I understood the importance of creating that for everyone in our household. However, during that time Daniel and I were the only two who did not have “safe” places to retreat to hence, no matter how much I tried we never felt safe.

It was a difficult task, but I worked with what I had.

Since moving into our new home Daniel is the happiest and calmest that I have ever seen him. He has never transitioned from a move like this and I am amazed at how much his verbal communication and social interactions have increased in only a few weeks. I am not really amazed; I knew that the other house was a sensory nightmare. It was also, a financial and physical nightmare because we never knew what was going to break or when someone would just show up. Every time we have moved I have analyzed Daniel’s behaviors comparing our previous house with our current one. In all circumstances, Daniel has shown the greatest amount of progress with less moments of regression in areas when we are in homes that have carpet, lanolin floors, solid muted colors painted on the walls, and very little decorations.

ME TOO! 

My apartments were all very minimal in color and flare – simple, solid colors and not much on the walls. It brought me peace. This home seems to be a perfect mixture of simplicity and absorption of acoustics. There are not many unexpected random noises. The windows are not too big causing constant distraction and buzz. Another noticeable factor is that this is the first house where we are nowhere near power lines. The vibrations from those even affect David. In our physical environment I have had to adjust and accept that I indeed do not like stuff or colors on my walls. I like everything very minimal. If I do not have that my brain feels constant static. That feeling keeps me in “flight or flight” mode – it fuels my anxiety.

My mom is an Aspie and she is the opposite, she feels calmer with a load of colors and a decorated home. :-)

I appreciate that about others, but I cannot live in it. We are finally at a place where our lives have some emotional stability. It has manifested a more balanced environment. I asked David a couple of years ago if he would just “be my friend” I have another post that I am writing to share about that, but the main point is that I do not feel safe emotionally in a romantic relationship. By him agreeing to us being able to get to know each other as friends it has allowed me to be more open with him and for our relationship to develop naturally as two people being friends. We got married within a few months of meeting we did not have time to really get to know one another and I never felt safe.

It has helped me to feel safe enough to explore and accept myself more.

We have discussed it quite a bit and have concluded that we cannot compromise on our living conditions ever again. The homes in which Daniel was constantly overwhelmed, raging with anxiety/fears, compounded sleep issues, causing aggressive behaviors and inability to communicate had certain things in common. Now we know some of these important factors and we will go to great lengths to ensure that all of us have a safe emotional and physical environment. By understanding and accepting how much our environment was causing us stress we were able to make the changes needed to improve our physical and emotional environment. This is not always an easy task; it will be something that we have to work at for the rest of our lives. Environment has the ability to help someone achieve their utmost potential or cause their talents, identity, and personhood to crumble. It is valid and a very important part of a person’s life.

By gaining this perspective I have been able to find even more positive things about Autism and how we can achieve great potential in the right environments. 

More things I read. (In case you are new reading my blog, WELCOME! also, I do share quite a bit of things that I read. I may not agree with everything, but I find good information from all different perspectives. My sharing does not always mean an endorsement. I share as kind of a resource guide.)

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Improving Physical and Emotional Environment I

Most of us are aware that our environment can have a huge impact on how we feel, respond, and communicate. I know this, but many times I tend to forget. In the past, I was not so aware and it caused serious confusion. It was confusing, frustrating, and at times frightening as my body, emotions, and certain responses manifested from me when I had no idea what was causing it. Now I have an understanding of my own challenges such as, sensory processing disorder, synesthesia, executive functioning disorder, anxiety, depression, PTSD, social confusion, and learning about how my brain processes. (I can keep listing, but I will stop there.) My brain consumes all sorts of information, details, and emotions with the inability to discern what is important and what is not.

Everything is important!!

This does not include all of the underlined or things hidden to my conscious that my mind is processing.  It collects everything thinking it’s all very important. So it files it away until a sensory, emotional, or PTSD trigger causes it to manifest. I have witnessed similar things happen to my kids, especially with Daniel. Because of his developmental delays, his ability to understand and process his physical and emotional environment can be even more confusing, frustrating, and frightening. I am still learning how much my environment affects me. With new understanding, I have been making changes to improve my quality of life – by doing this, I have gained much more self-acceptance and understanding. This allows me to communicate better.

It can still take some time for me to understand and find the words to explain to someone how I am affected or feeling.

I have been able to discern many of Daniel, Ariel, and Joshua’s challenges. I find it easier to observe and discern what children are feeling, I have always been able to do that. I also feel connected to my kids so that makes it easier for me to “read” them. For most of my life, I have been disconnected from myself. For Autistics, the world can feel “unsafe” as there are so many unexpected things. For instance, our world can be accosted by sound, a voice, an inability to recall direction, unfamiliar surroundings, faces…all of what feels like chaos can ensue “fight or flight” responses. I have come to realize that most of my life has been spent in “survival mode.” I had to stay disconnected from myself to protect myself.

If our environment is not safe, we are in constant defense mode.

Our homes should be our safe place but it is not always the case. After reading from many other Autistics, I believe that we are resilient and find ways to help ourselves in the midst of what feels like constant battlegrounds. In hindsight, I realize that when I did not feel safe in my environment, my OCD traits manifested and my routines were unable to be changed. My anxiety levels became heightened, depression overwhelming, and my special interests became obsessive to the point of becoming all consuming. When I lived on my own, I was able to have the safety of solitude and no one else’s energy or challenges disrupted my downtime. When I am able to have downtime, solitude, and a safe place, it is not has debilitating when my routine is disrupted.

I am not going to say it does not cause me problems, it does; however, I can regain my balance sooner if I know I am not surrounded by “threat.” 

A safe place for me means an environment that is familiar, steady, comfortable, trustworthy, reliant, accepting, nonjudgmental, peaceful, and quiet. When I was a kid, I would surround myself with my stuffed animals while listening to music or audio books. Physical surroundings play a huge part in how I am able to process information. Not only do my basic five senses get overwhelmed easily, but my emotional sense is so heavily connected to them and my memory that I can relive past experiences of social, emotional, and physical situations with a familiar smell, a light fixture that I have seen before, or a song.

I have a feeling that many Autistics share in this as well.

This emotional sense can cause me to feel another person’s “energy” (I am not sure what else to call it), but I can walk into a room and be consumed with all sorts of emotions from the people in there. I also absorb the emotions of people while reading their words. This causes me confusion, jumbles my brain, and makes it even more difficult to interpret what people are communicating verbally and nonverbally. This is why I am so protective of my environment – for my sake and for my kids. They too feel these same effects. All of them are highly sensitive to emotion and their physical environment. There comes a point where they must be exposed to different things, just like me. We cannot be completely shut-in and we are not. To ensure that we can go and experience this world, I try to keep our home as safe and calming as possible.

The major component in creating a safe physical environment has been dealing with the emotional environment first.

Just as many people, David and I have been under a tremendous amount of emotional, financial, physical, and spiritual stress throughout our entire marriage. Little did we know that even before our marriage we had accumulated layer upon layer of stresses/stressors. They were all sorts of dynamics, faulty thinking/perceptions, ideals, fears, etc … that were unknown, not understood, and/or never dealt with. Yet, they creep up whenever trauma or stress arise. This is not uncommon among many people. The difference is that most people do not loop, analyze, fixate, internalize, meltdown/shutdown, or go into utter panic because they cannot make sense of another person’s behavior.

I am describing myself with all that.

David has his own moments, though he simply manifests them differently. It would seem that based upon several things I have read from Alltistic woman who are married to Aspergers men, his attitude and behaviors are very much in line with characteristics described by them, making it seem as if he is indeed somewhere on the spectrum. In his own unique way with common traits, we say that we are “Opposite Aspies.” We tend to have a commonality when it comes to an analytical way of looking at things; however, we are very different in how we process emotional thoughts and conceptual thinking. We had very different lives growing up and very different experiences. His world confused the heck out of me and he assumed he understood mine. There are many factors as to why our home environment was emotionally unbalanced – I am not going to go into the details in this post.

In a tight little nugget, we can say much of it is about communication.

For several months, we have found ways to communicate that help us to understand the other person’s challenges or reactions…maybe not always, though that’s true of any relationship. The lack of understanding or inability to communicate adds a huge amount of stress. It makes me feel like a failure and upsets me because I feel forced to be mean and speak directly, which can be hurtful. However, from my perspective his way of communication can be hard, invaliding, and insensitive – although, he could say the same of me. ;-) This is where the needs of each person’s emotional environment needs to be taken into account. In a relationship, there needs to be compromise, but how do you find compromise if one is nonverbal or loses their words?

How do you find compromise when one person works through their process through talking and the other needs quiet and to be alone?

How do you have compromise when a person cannot discern what they are feeling or why they are feeling something? How do you create a “safe” emotional environment when communication is distorted through inability to understand one another? I have no answer other than David and I are willing participants in learning how to find compromise and create a safe environment for all of us. It’s taking a lot of work, but we are willing to do that for our kids and each other. The stress and anxiety of being misunderstood or forced to speak when I’m not ready makes my emotional and physical environment unsafe. This has been my life – a constant state of feeling unsafe. I found ways to cope, mask, hide, escape, but they only lasted so long before my inevitable breakdown or my other tried and true means of coping: creating a world of seclusion to protect myself.

Thankfully, throughout the last few months I have been able to explain to David how I have felt unsafe. 

Continued Improving Physical and Emotional Environment II …

Sharing some reads … I feel that my inability to regulate emotions comes from multiple sources: Aspergers, SPD, Synesthesia, which has been influenced by abuse, PTSD. I am sure many things connect, collide, and get all jumbled causing some issues in that area for me.

 

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Going Down As One Of The Great Days

This morning started off awful. From the moment Daniel woke up it was meltdown mayhem. This post is by no means going to be complaining about what took place. I have been waiting for it to happen any day he has does remarkably well with everything that has gone on the past two weeks. However, it is exhausting and when I have my own issues along with trying to manage everyone else around here I do reach my limits. This morning was two hours of nonstop meltdown and I could do nothing to help Daniel. I think playing in the snow yesterday pushed him to his brink. This morning when he could not find his thermometer to check the temp outside there was nothing that was going to ease his frustrations.

When I could not find it and we had reached no resolution, he just went to his room.

He went to his room! He has not done this before. Usually, when it reaches that point his day is ruined. He can find calm, but he will still be on edge and practically anything could trigger him. It is still very difficult for him because he is not able to communicate all the time what is upsetting him. He seems just as surprised by his emotions as we are at times. He does not understand the toll that all of the sensory/emotional/social/everyday processing has on him. I still struggle with this too. When you are having fun or just living life you do not expect it to be so trying. It is hard to remember and realize how much processing your brain is doing – many people do not seem to need to worry about that.

This week, just as last week his school schedule changed.

He lost his speech pathologist, who he loved dearly; though he has accepted that she is no longer with the school he still does not understand why she left. He is affected by not having his regular sessions. He has also, been doing a lot of school work because he is a few lessons behind. I have had him get ahead on the subjects he likes so we can spend extra time on the others. It snowed and that has him in all sorts of excitement and anxiety. The temperature change affects us; our bodies do not regulate temperatures very well. The cold weather is hurting me terribly. He played out in the snow which has been a new sensory sensation for this year. He loves it, but he has no comprehension of when he is too cold so he does not understand why I will not let him play outside for 8 hours.

There is more with the excitement of Christmas coming and school break lingering around the corner.

There is just so much for him to be thinking about and processing through. When he hit his limits this morning, I understood the why’s I only wish I could have helped him in some way. But it needed to come out. He needed to decompress and reset. After a while of being in his room with the door shut, he came down and said; “Mom, come here I have something.” I followed him up to his room not sure what he was going to show me. When he says that it usually means that he wants me to give him something that he knows he cannot have, like a light bulb because he wants to break it and see how it works. :-/ Not today; today he showed me what he had “created.”

He said, “Look what I made! It is a home. The pink carpet is the water where my turtles live. This is where my kitten lives, under here is where Pooh Bear lives, and Elmo lives here. This is where my penguin lives, this is snow and Tigger lives here.”

I asked him if someone had showed him how to do that or if he created it all on his own.

He said, “I thought of it all myself and created it myself.” Through it all he was smiling and full of giggles. No one would have known only thirty minutes earlier he was in tremendous distress and inconsolable. Since we have moved into this house Daniel’s meltdowns have lessened. I am going to write a little more about his struggles when I write the post about environments and how much it affects our lives. However, I wanted to share this for a few reasons. I was hoping to give people some insight who may not understand why meltdowns occur. They are not because an Autistic child or adult are throwing a fit. There are reasons for them. The reasons are not always so clear and can seem sudden, sporadic, and may be triggered by something that seems trivial to others.

They are not they can be complex and layered.

If someone is unaware of how things can affect an Autistic person, they may not consider how traumatic it can be if their routine is suddenly changed. For me change equals chaos. Everything that I knew a moment ago is has all mixed up. In my mind, I see file cabinets and when change occurs it is like someone came in and pulled out all of my beautifully organized file folders. They are now a mess strewn all over the place and I am frantically trying to get them back to where they belong. I can handle the change as long as I have answers for it and I have time to put everything back where it is belongs – adjustment time. Time to adjust can vary depending on the situation, sometimes it only takes minutes other times it takes me years.

I wish I knew why this was so, but I do not and I have no idea how a situation will affect me until it happens. 

Maybe others have more insight on that or quite possibly it is just different for each individual. If the Autistic person is unable or even unaware of why they are feeling a certain way they cannot explain to the person(s) the reasons for some of their behaviors. For instance, Daniel is unaware of how much energy and mind power it takes for him to do his math. He loves math so he does not think that he is working very hard. However, he has been learning fractions this week mixed with multiplication tables and story problems. These all take a great deal of processing, the story problems are challenging and draining for him. We have to spend extra time on them because if they are not worded “just so” he will get too confused and not be able to move on.

When I read the questions, he may ask things like why does that person need to buy such and such and why did they need so many.

Or why does he want to give pencils to his friends? Where do they live, are they real, is that a boy or a girl? These are a few questions that he asks when given a story problem – his mind is full of questions. He is constantly processing, analyzing, and trying to make sense of his world. When the additional components of say sensory processing is affected this becomes even more of a challenge because he has to work twice as hard if not more to do things that do not cause him such struggles. It takes time, processing time can be slow some days and rapid fire others. I keep track of as many things as possible that I know he is processing. Interestingly, I have a knack for observing and studying people in this way when they are close to me. I think I had to learn to do that because of my upbringing it helped me survive.

I do this with everyone in the house that is why many times I do not realize how much I am processing too.

Those things that seem not to be bothering him are ones that I try to remind myself of because I know at some point he will have a response. He will have some sort of reaction it could come with only a few questions and he feels at ease or it could come after several hours of having a meltdown. Either way, I try to remember so that I can tell him. I have been explaining these things to him. He has asked me, “Why do I get upset?” When he asked me that one day, I decided that I would try to make sure I explained to him the reasons to the best of my observations. So far, this has helped him feel much better about himself and he has not been triggered into greater meltdowns because of being confused by them. We are learning and growing, I am still doing this for myself.

I was not aware of how confused Daniel was by his meltdowns until a month or so ago.

His ability to share that with me has given more understanding as to help ease his fears and anxieties. Daniel is not made to feel badly when he has a meltdown. He is not punished; I do what I can for him and try to make him feel safe anyway I can. Sometimes he is able to communicate what he needs sometimes he is not. If I do not stay calm he will escalate, I try to stay calm and not go into fight or flight mode myself. Fight or flight with my kids means I shutdown. It is not good when I shutdown because I lose my words. If I lose my words it makes Daniel very anxious. Today I had to take few deep breaths and walk away. It was not one of my better days, but we managed through it. I am having my own reactions to the last two weeks, the change in my routine, and the weather change.

When he feels overwhelmed now he has a “safe” place to go to (his room) which has helped a great deal.

Today Daniel decided to go to his safe place on his own. He chose to take time in the quietude of his room to make himself feel better. He did not rely on me to comfort him. This is a huge deal for him and it makes me very happy for him. This brings me to some more pure awesomeness! Daniel has an incredible imagination. However, much of the time no one knows what he is imagining. He does not share often what or how he is playing. To someone who does not know him it could look as if he is simply staring at objects or moving them around. He is doing much more than that. Today he shared with me about the homes he created for his animals. His animals are his best friends. He shared with me how he plays with them and that he talks to them.

He has told me on several occasions that he loves them as much as he loves me as well as everyone in the family.

That means that they are family to him and we treat his animals as they are too. Ariel has the same connection to her dragons and Joshua with his stuffed animal dogs – they are real. Daniel talks to his talking Elmo, Tigger, and he has informed me that he also, speaks penguin language to his baby toy penguin that makes sounds. This is all new, he would not talk to talking toys in past – he would just giggle and smile. Now he has conversations with them and he told me that he has an imaginary friend. I have heard him talking to him a few times now. He started that after Joshua was talking to his imaginary friends “Jake” and “Jay”, but he says that he has a bunch of them. The first time Daniel told me he had one too I asked him his friends name and he said, “I don’t know.” He has recently, given his friend the name “Daniel.” He names his stuffed animals Daniel too. :-)

I admit I had a rough time of it today – I am pretty drained, but this day is definitely going down as one of those great days … Pictures! 

Related Posts/Reads (The first few are from Autism Discussion Page)

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Autism Cannot Be Blamed for Everything

In the beginning, I had no idea what autism was only that it was fused with negativity and was so enigmatic. Things started to come together for me when I read “The Complete Guide to Asperger’s Syndrome” by Tony Attwood. However, it was not clear enough for me to understand the differences that Daniel had from an Aspergers diagnosis. He did not fit the criteria for Aspergers, though different doctors would disagree. He was social at times – when we went into the doctor’s office he just looked like a very busy “I have things to investigate” type of kid. If the doctor talked to him he would look at him, he would smile, but not for long and he did not talk.

Mystery?? Not really, now that I understand a bit more about autism.

Through the years, I have gained better understanding I still find it challenging to explain to a person. If you put autism into a search engine you can get all sorts of information – if you do it without any knowledge or you have a preconceived idea it can be riddled with even more confusion. What is autism? I am not going to go into defining autism. Other people have written some great posts and I will share a few at the end of this. However, for me when I understood that autism is considered a “social disability” I was able to separate my different challenges – I was able to see how others, including myself had blamed all symptoms or behaviors on autism when in fact it may or may not be a contributing factor.

There can be many other challenges that impact the quality of life for an Autistic individual.

For instance, Daniel is Autistic with sensory processing disorder, auditory processing disorders, language/speech delay, which could be broken down into specifics, one being Apraxia. He has generalized anxiety disorder, gastrointestinal problems, and sleep problems too. Are these caused by autism? I do not believe so since, each one of these a person can have individually without autism. All of these issues run within my family on both sides not everyone in my family is Autistic. There may be a genetic cause responsible for all of these conditions, like a “cluster effect” however; when we speak of autism it is a specific social disorder.

Breaking down each diagnostic component and analyzing it helped me to understand that I could not “blame” autism.

I sought out the differences between diseaseneurological disorder, and syndrome by doing so it helped me understand even more. The more information I read the more I understood that there are other contributing factors to the complexities of an Autistic individual. Each individual carries their own vast or limited diagnosis along with their autism diagnosis. Not only that, but the person’s individuality – their personality – played into their behaviors and their responses to situations/environments. There seems to be a “grouping” so to speak when it comes to autism. The overall perception is that autism represents limited qualities, those limited qualities strip individualism and personality.

Autism simply and generalized defined is a “social disorder.” 

(This is revised) I do not believe that it is that simple, however; for the sake of keeping this post as focused as possible I have limited myself to generalizing. I will share this though, “When people refer to “Autism” today, they are usually talking about Autism Spectrum Disorders (ASD), which are five complex, brain-based disorders that affect a person’s behavior as well as social and communication skills.”The Autism Science Foundation I use that because out of all of my searches in hoping to find an easy way to say what autism is, every one used different language. Several of the links I share below are much more informative. For me, I found it very confusing that so many people were blaming autism for other symptoms. I found it confusing too that people got so upset at,

  • The need for routine – Practically, every child does better with routine and many adults do too.
  • Difficulty with change –  Many people have difficulty with change we all need some sort of adjustment time, and here is the question I would like to ask, “Why do people think that it is perfectly fine to change routines, schedules, life in general without communicating the change to children? People act like nothing phases children or that they should be fully capable to “go with flow” with whatever the adult wants or needs to do.
  • Inflexibility and repetitive behaviors – When your world does not make sense these things help bring constant comfort. Being inflexible, in my case and what I have observed with my kids comes from lack of understanding and needing to feel in control. It is not a manipulative control it is a control to help ease confusion and chaos in the mind.

Early on when I was trying to find answers, there were implications that the Autistic child/adult were purposely doing these things. The elusive language filtering in the perception that Autistics do these things to “get their own way.” Those indirect, at times, very direct implications that autism was the cause of everyone’s frustrations continued to fuel this big invisible dark mass that lurked and lingered. Autism could be blamed for the slightest behavioral issue, the demise of marriages, even to the extremes of mass murder. It is an easy word to latch onto and blame. Have the symptoms I listed above been disruptive and difficult in our household?

 Yes, but anxiety and sensory issues have too.

I cannot say this is true for every Autistic, but when I realized many people, many “normal” people have very similar issues then, my disconnected feeling from humanity was lessened a little bit. Another component is learning challenges, currently known as learning disabilities. For instance, I have read from parents and spoken to several who have blamed autism when it is ADHD/ADD symptoms. Though autism and ADHD/ADD tend to run closely together with many people who are Autistic not everyone who is Autistic is ADHD/ADD and not everyone who is ADHD/ADD is Autistic. As I understood that there were co-occurring symptoms and co-morbidity lumped together into the societal perspectives of autism, I was able to understand what autism was in our household.

This helped me to have more sympathy and understanding toward families whose struggles were not the same as ours.

Autism was not just a big lump of confusion. Autism was no longer an IT, autism became an individual. Autism was no longer a huge monstrous thing to be frightened of autism became individuals with very specific challenges and uniqueness. Autism was now personalities, many faces, bodies, thoughts, colorful, hopeful, so diverse, yet sharing many of the same challenges. However, the challenges could be expressed, manifest, dealt with in vastly different ways due to our other co-morbid conditions. Our environment could determine how we respond. Our upbringing could manifest very different behaviors in how we respond. Our inability to communicate could cause additional reactions.

In a way, I saw it like this -

waves_added

Autism along with many other factors could influence or increase/decrease symptoms of autism.

This gave me a clearer understanding, I was able to see Daniel, later myself as a whole because I was able to see autism as being a part of us and I had names for each one of our challenges. For me, when I broke each component down I could see the whole and how each one affected the whole. In the beginning, I saw autism as something that we could defeat; I did not see it as part of who we are – it was disassociated. I believe that perception came from the lack of credible information that was out there at the time. I had adopted the mindset of demonizing autism because of my lack of knowledge. It was a hard day to realize by doing so I was dehumanizing my son and I was blaming myself. Now we have tons of information to help guide parents and individuals into receiving and accepting an autism diagnosis with a more positive mindset.

When I say “positive” I am not saying that everyone should be excited and embrace the diagnosis without any negative emotions.

In part, it is difficult to accept at first because of the way autism has been portrayed in society. The way that it is broached with parents or the person can influence their perspective of the diagnosis. However, any diagnosis takes time to process. I do not think that parents should not be allowed to express their concerns, fears, and yes, even disappointment, but I also, believe that they need to move forward and seek positive ways to gain support for themselves and their child. I feel the same for those adults who are receiving their diagnosis. I had to go through a process of acceptance – it was hard at times, it still is, but discovering each condition and how it affects me has led me to a place of healing. As I have gained more knowledge it has helped me to understand each of my children better and has made me more empathetic to people in general.

When I decided that I was going stop trying to make Daniel “normal” and try to understand the mystery of autism, I saw my son.

I saw all the parts that made him the beautiful marvelous neurodiverse little guy that he is – I saw the beautiful minds of my other kids, in David, and myself. Autism was no longer something to blame; it was now an answer that opened the doors to multiple understandings and a new appreciation for each individual that crosses my path in this lifetime. Autism is a word, a diagnosis, a useful guide into helping gain support, it is different for each person, and I acknowledge that for some the symptoms are incredibly difficult, but it is not a sword of evil to wield at the world to be blamed for all the woes that pains us.

 Autism cannot be blamed for everything.

Some other reads.

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Intermission Post – Keeping It Thanksgiving Lite! (Kind Of)

I figured I would hold off on my next “intense” post and keep chipper. :-) Well maybe not chipper, maybe less intense? Maybe half the calories in this post than, usual? ;-) My brain is musing so I will need to write a little bit about what I am feeling so I can move on. I am feeling much less anxious this year at the start of the holidays. My heart does not feel as trampled upon as in years past, as. Today I looked out the window and had flashes of my dad, step mom, and my sisters all spending Thanksgiving together and I did not feel the usual hurt. I felt fine, but the lingering feeling of being left out and kind of sad struck me. I told David and expressed my confusion because Thanksgiving was never a big holiday time with my dad.

I did not spend much time with that side of the family during Thanksgiving, so I could not understand my connection to feeling left out. 

In addition, I am not being left out. Our family is welcome to come, but there is no way that we can make road trips. They live three and half hours away. Daniel still cannot handle being in the car for long periods of time and both Ariel and Joshua get car sick easily; so it is not an option. David shared his thoughts that possibly it was because Thanksgiving is so focused on family and since, I have this feeling of disconnect and not belonging that I may feel this sense of being left out. I am sure that plays into my feelings. I am happy with our tradition of staying home and spending time with the kids. Honestly, I am not a big fan of many holiday foods. I find many of the smells repulsive. Food makes me uncomfortable and the whole idea of sitting around eating with family and friends makes me want to burst into tears. I cannot even sit at the kitchen table with David and the kids. I hate being around people when I eat, HATE it!

Sorry, little tangent.

I make my version of a Thanksgiving dinner – David only requests stuffing and some sort of dessert that brings him the nostalgic feeling from his childhood. I have done my best to create that with my tasty gluten-free deliciousness … it has taken a couple of years to get them to be tasty. Food science rules! This year is going to be a little different. In the past, I have been so exhausted, mentally drained, and/or overwhelmed with emotions, PTSD connected to the holidays, and from Daniel being overwhelmed from the beginning of October to November until around February that I have taken days like Thanksgiving and completely shut down. I would make all the food, take every ounce of my energy to get the tree up then, I would go tuck myself away onto the computer trying to escape or work through all of the jumbled thoughts vexing me.

I do not feel that way this year.

Daniel has not been in his nonstop fall/winter overwhelmed mode this year. I am having a few flashes of the past, but I am not reliving trauma as I have done. I have found tears suddenly flow and pain in my heart, but I have also found healing from embracing those emotions and not ruminating over them. Tomorrow, I hope to spend much of the day cooking (I love to cook), hanging out with the kids and watching goofy movies, putting up our new tree that already has lights SO I DO NOT have to put them on, (bane of my existence, Christmas lights Aaaaggggg!) and enjoying myself. That would include limiting my social media exposure on my personal fb page. :-) When I see pictures of my family being happy, loving on each other, sharing their pictures together it feeds into feelings of not belonging.

It can also, fuel social confusion because many times how they treat and talk to or about each other does not match how much love they are showing in their pictures.  

I do not mind that I am not there. I am happy for them to spend that time together – it does bring me joy to see them happy. However, it hurts too because it is connected to so many holidays that I have felt lonely. The reality is that I feel lonely when I am with them too. I may even feel lonelier at times because it makes me so aware of how much they do not know me and I do not know them. It makes me lonely because when I share my thoughts I feel like a foreigner speaking a different language with those I am connected to genetically. Then, again I do enjoy watching them, listening to them, appreciating their uniqueness, and analyzing family dynamics. I do, they make me smile and I am intrigued by who they are – I guess sometimes I feel so alone because no one else seems to share those same thoughts.

Enough of all that!

I am excited about tomorrow and I think it will be one of our best Thanksgivings. I am thankful that Daniel is feeling so much better this year. He has had a few days that have been rough, but nothing like the past years. It makes my heart sing when he is a happy fella. All the kids are struggling to get school done; they are too excited and anxious. I give them props for pushing through and working so hard when they want so much to quit. We all need a couple of days away from school. I have not told them yet, but on Saturday we are going to our little cousin’s birthday party. We have not been to a birthday party since, my nephew’s several years ago.

It went ok, but when we got home that was another story. 

I think this time it will be different and I believe Daniel is going to have a great time. I cannot tell him yet because it will turn from excitement to terrible anxiety. I will print out the map of where we are going, show him pictures of them and their house, prepare cupcakes for him to eat, and give him the schedule of the party to help ease some of the anxiety and excitement. Thankfully, it is only two hours the little guy is turning one year old so he will max out by then too. There will be familiar family members and a safe environment so I have hope that it is going to be a positive experience all around.

I know I shared some of the negative emotions that linger for me, but there have been many positives this fall. 

I confess, it feels good to be invited to a family event where I do not have any negative associations. I only recently started to have more contact with this cousin and it has been all positive. I feel no “weirdness” like judgment or that underlining “this is making me uncomfortable” feeling from her when I talk about Daniel or when she is around him – that feels really good. I am kind of excited too because David is coming. For the longest time, he has been checked out when it comes to family events. He stayed home while the kids and I did things. It is nice to have him come and participate in these things. There have been a lot of changes going on in our lives for the better.

I cannot believe I am going to say this, but this year I am thankful for change. WHAT?? 

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Empowerment and Validation

I spent a lifetime feeling invalidated, I was struck with even more of this when I became a parent. It is interesting how quickly people give advice or communicate how they feel you are doing it wrong. I found this harsh reality even more when it came from mothers, not only special needs ones. People can be so judgmental and down right hateful at times to mothers. I know this happens to fathers too, but there is a foreboding myth that if something is “wrong” with a child, the mother is at fault. Are we still getting blamed for the sex of the child? There is another aspect that plays into this as well and that is the “mom comparison,” which I find frustrating. I wrote about it in this post The Mom Spectrum.

I witnessed even more harshness when it came to special needs mothers.

However, I can really only comment on what I have experienced and witnessed. The moms that I have encountered who do not have special needs children, have given me unwanted advice, made ridiculous comments, or stayed silent and acted like I had the plague. Not all, but many did (do) respond like this. The few parents and organizations I had contact with during the beginning of our journey invalidated me as a parent. When I allowed Daniel to behave certain ways, they scolded me in “loving ways” and made me feel that I did not know what was best for my child. If I did not correct Daniel when he hand-flapped, made loud stimming noises, ran the perimeter of the building, did not make eye contact, and the countless other things I “allowed” him to do, they politely told me that they did not allow their child to do that or they shared (without my asking) how they helped their child to stop such behaviors.

 I wish I could say that this has stopped, but sometimes this still happens. 

Some people seem to feel that it is their place to help me help Daniel. While, I will embrace any suggestions that are constructive, I do not take kindly to people telling me that I “need to correct” my son or any of my children. I found myself doubting my intuition and the sound information I had been reading about autism. Ironically, I found much more support from the pediatrician and therapists we had at the time. I have heard and read from many parents who did not have such positive experiences. One of the most empowering experiences that set the tone for our transition to a more positive journey was with the therapists and pediatrician we had at the time Daniel started the diagnosis process. His doctor had a nephew who was diagnosed with Aspergers.

She had no doubt that Daniel was Autistic.

She took charge by having her staff set up all of the evaluations that we needed. (You can read some of that story here.) I went in expecting to plead my case, but I didn’t have to. She validated and supported me. She also did not have a negative perspective. She was comforting with a direct and enthusiastic approach to early intervention. She also didn’t push ABA type of therapies – her main focus was getting a diagnosis, speech, and OT therapy and detecting any possibilities of other conditions such as sight or hearing problems. It was challenging because I had mixed emotions: on one hand I was happy to start the process of finding answers and to have someone believe me; on the other, I was nervous about Daniel being Autistic. What does that mean? At the time, I was torn between my church family who “believed” for Daniel’s healing and telling me that autism was not of God and a medical environment that was giving me answers.

It was a great emotional battle within myself.

At church, I was told not to trust doctors or labels, (which I would now use the word diagnosis instead of labels) as well as being accused of my sin causing his autism. When that ticked me off and I spoke out refusing such nonsense, they went after David saying that his sin caused it. There were many other things that happened as well. We ended up leaving that church and found another church a year later; (I think that is an accurate time frame, OH, and sorry to the folks who have read all that before thank you for still reading! :-)) that was much more knowledgeable of autism and supportive of us. However, it was difficult to keep my hope, dealing with my own personal challenges of social confusion, depression, and anxieties. I cried a lot. I felt desperate much of the time because I was confused and did not know which direction to go.

When the doctor validated my concerns, it helped motivate me to follow my gut.

The therapists built into me even more and gave me answers. They gave me a whole new understanding about what Daniel was going through and ways to help him. They did a mixture of ABA type of methods, but mostly they showed me how to work with Daniel’s strengths and positive reinforcement. Instead of treating his behaviors as things to be corrected, they established a relationship with him and me. It made it more difficult when our insurance ran out and we could not qualify for services any longer. These ladies gave me hope and used words like “different” ways of processing and “every child developes at their own pace.” It was a nurturing and caring environment. Importantly, they too were encouraged that I wanted to be with Daniel for every session and that I asked them questions about his behaviors and why he did them.

I requested resources to do it at home. I had my doubts that I could help Daniel.

I even asked them do you think I can do this with him? Will I be able to help him? These ladies encouraged me and shared that they had no doubt that I could. They empowered me to believe in my abilities to know my son and to help him. I did not go into those therapies without knowledge. I had already researched every word and therapy the pediatrician had used and/or jotted down. I am not always able to help Daniel or Joshua. There are days when I am at a loss and I am perplexed by their behaviors. Why one day something works, but the next day it does not can make me feel flustered and lose my bearings. What if I have been doing it wrong the whole time!!

As you can see, I still had my doubts and I still do – always. 

I think if I did not I would not be able to learn or challenge my own paradigms. “The first principle is that you must not fool yourself and you are the easiest person to fool.” ~ Richard P. Feynman. This holds as long as those doubts do not cause me to put all of my trust in others without any discernment. My doubts help me to have the wisdom to know when I have exhausted all of my knowledge and know when I need to ask for help. What I learned from them was not what I have read about when it comes to typical ABA methods, and I am grateful for that. They gave me positive approaches to look at my son and myself. They taught me and educated me – they believed in me and Daniel.

I felt more empowered by being validated by the psychologist who diagnosed me. 

She validated many things for me. Gaining my diagnosis helped me to transition into fully embracing myself and empowered me to regain my voice. It had been distorted and confused with so many other voices that I was in a muddled hole reaching for a way out. Those voices still come – I have to work at quieting them. They ring their echoes every time someone misunderstands me or my actions. They come up and stab me with violence whenever I read negative perspectives about autism. They lurk about creeping and tickling at my ears whenever I cannot help Daniel or I feel too overwhelmed to handle life. However, what I realized through all of this was that in the face of invalidation and being stripped of feeling empowered, that I have been validating and empowering myself all along.

I would not have made it this far in my life if I had not.

I believe that goes for many of us. The world tries to make us feel weak, other people try to make us feel weak because of how they were made to feel weak or invalidated. Autism is not all sunshine and rainbows – some days I want my brain to stop. I want the intense emotions and anxieties to stop – my own and my children’s. However, during the most difficult of days I no longer feel hopeless. I have many answers and many times I know how to handle my situations in our ways that work best for us. I am validated and empowered in my decisions because I had people believe in me and trust my judgments, but mostly they confirmed that I was already capable.

I had people come along and drown out the voices of negativity and lead me to a path of ability – it will be a lifelong path. 

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