Tag Archives: empathy

“Just Be My Friend” I

This post ended up being close to 4000 words and still counting … I decided to break it up and give a little summery/disclaimer as well. This is a whole train of thought culminated throughout an almost three year process. I think I mentioned it several months ago, but I cannot find the post where I said I was writing about transitions and how I asked David to be my friend. I needed the “wife” expectations off of me and I wanted to get to know David; feeling safe. I do not feel safe in the context of marriage or a romantic relationship. As I have been blogging I discovered that the root of many of my issues has been social confusion and being utterly perplexed by humans – those I do not know and those closest to me. In my own self-examinations I also found some very key reasons for why I get hurt, confused, frustrated, and tend to isolate myself. This particular thought process contains thoughts and ponderings leading to why I ultimately asked David to “just be my friend” and allow me to heal.

I was in no state of being able to be a “spouse” and I share why at some point of this wordy post.

However, I cannot jump to it right away there are many levels to these thoughts and history that I have had to process through – mainly coming to a greater understanding of manipulation and how people who are deeply hurt or so desperate that they do anything to control their relationships.  I have been easily controlled in the past because I did not understand that people manipulated like that. There is no way around it all of us manipulate to some degree, babies do it from the beginning to get what they want or need. Manipulation is not necessarily bad – it becomes a bad thing when you lose yourself — when the person now controls your emotional state. When you feel like you have to have them in order to survive — when you can no longer have an autonomous thought without feeling as if you have done something wrong. That is when manipulation is being used in a harmful destructive manner.

Many people are not even aware that they are doing it because it has been taught to them.

Those forms of manipulation become so ingrained that it is hard to see and it embodies a fear of rejection so intense that it can feel unbearable to even consider changing unhealthy life/mind patterns. David and I decided that we had to take hold of the unhealthy patterns we had been taught and that we created on our own as a means of protection and self-preservation. We decided that we were no longer going to live in a “survival” mindset when it came to our relationship and we ripped open the painful task of revealing to each other our biggest fears, pains, and damaging thoughts to become people who strive at creating healthy life patterns and coping skills first for our children, it obviously has manifested to ourselves into to reaching out and building other healthy relationships.  I share all of that so you are aware that everything I share in these next few posts David knows and is completely supportive. We are a team working together for both of us to heal and create a balanced loving relationship.

And now onto the first post …

I have not had many successful relationships. When it comes to romantic relationships, my track record is zero with the exception of my relationship with David, however; I am about to share with you how it has and is transitioning into a healthy relationship. With friendships I have several that I have kept over the years, but as I have written about before I am not really “best friend” material in the sense that I am not willing to sacrifice my time that belongs to my family or my own sanity to keep a friendship that requires too much emotional needs or wants. It is not that I do not want to, I do. As a matter-of-fact that is what I am accustomed to doing and in the process I lose all sense of self and identity. My identity becomes “helping” them or feeding their never-ending need for the “love” drug I like to call it. I am referring to a personality that drains me because they are never satisfied. They only come around when no one else is giving them what they want — their fix.

They get enthused and excited with my directness and how I constantly place the responsibility back onto them to make their own decisions.  

However, this too is another reason why I do not keep friends like that for long because I do not satisfy their insatiable need for feeling good. They do not want to change they want to feel better — I am not the person for that.  I give no fluff answers and I tend to ask the hard questions seeking the root of the issue instead of whitewashing so they continue in unhealthy patterns. I seek balanced types of relationships myself. I do not want people in my life that will not be a positive influence for growth and change from unhealthy patterns.  Yes, there needs to be balance, compassion, and sensitivity in the process, but to me that is a relationship. It hurts sometimes, but the outcome is always a stronger and more stable relationship — not another person’s emotional needs to be fulfilled at the cost of my own emotions. I learned the hard way that those relationships lead me into confusion and depression for various reasons so I set boundaries. That goes for any relationship, family, friends, and yes, spouse.

When I was single, it was much easier to bounce back and go back into being someone’s emotional support.

I had also; succumb to such relationships because I had been taught that my emotions did not matter and that my duty on earth was to ensure that everyone else was happy. I desired peace at all costs (still do, still a huge struggle) so I did what I needed in order to try to keep people calm and stable … thinking that it would help them. You cannot help those who do not want help – once you become the emotional dopamine for an individual you are no longer in a relationship now you are their drug when they need you and when they get their fix they leave — only to return when they are down again. They become your emotional dopamine too! I have encountered this throughout my life with many relationships –- all sorts of relationships from siblings to coworkers. However, throughout the years I continued to fall into it because I have never had a good example of what healthy friendship looked like, parental relationships, romantic relationships, etc … I will interject here and say, with these relationships I think I believed that in some way I was in control.

I was not in control at all because their emotional state determined how I felt, acted, basically lived my life.

It would revolve around them and that my friends is co-dependency. I grew up learning this from various relationships from my parents to boyfriends — the co-dependent, the enabler; although the way I believed it to be was that I was the “supporter.” My instinct is to help people; I thrive when I am in a position to help others. It is a drive that naturally comes out of me. I help in any way I can, physically, emotionally, spiritually, financially, whatever I can do. This part of me has been taken advantage of so often that it led to spirals of deep depression and painful social confusion. When David and I met the familiarity that I felt with him set off red flags, but they were also drowned out because of years of being conformed into co-dependent/enabler type of relationships. I have this instantaneous pull toward those who share this familiarity it is similar with those who are alcoholics and other types of additive wirings.

I will have a knee-jerk reaction to get as far away from them as possible while feeling this strong urge that I need them.

All of this plays a huge role in my past relationships as well as my current ones. In the past, I did not know how to set boundaries or what types of relationships were toxic for me. When I met David I was in a very vulnerable place. I was suffering from severe heartbreak from several relationships that ended. I was separated from my spouse at the time, I had fallen in love as so many describe it to be for the first time (I have yet to feel such intense emotions or connection with another person still, I believe I have sorted out the reasons for this in many ways, much of it has to do with brain chemistry and attractions. Some attractions may feel right, but they may not be the best for either party.) and I was in great turmoil because it was not my spouse at the time! That gnawed at my moral compass and my religious views creating a great depth of self-hatred because I could not stop the attraction and pull toward the person.

My church had accused me of doing things I had not done.

I was voted out by the elders to no longer be allowed to teach Sunday school based on rumors, the person who I loved did not return my affections, and shortly after that I was laid off from my job. (If you have been reading my blog a while, I know I have written about much of this before, but I need to write it out to help all of my thoughts process where I am at currently in my journey.) I had felt abandoned on so many levels and confused because of my own emotions. I was desperately trying to find my place in the world. I got a job being a personnel manager at a temporary agency which was nothing but social interaction and I worked for a boss who was erratic, I became extremely ill, physically I was malnourished because I lacked funds for food. I was also working about 45 to 50 hours a week of constant social interactions via in person, email, phone, and snail mail correspondence. My spare time was spent devoted to worship services, small group, leadership training, prayer meetings, and serving in whatever way I could.

I was single and devoted to the “work of the Lord.”

I was mentally drained, spiritually, emotionally, and physically fatigued. I would literally collapse on my days off or after church. Some weekends I could not move from my couch from pure exhaustion and the need for solitude. After learning more about oxytocin I feel that possibly what happened during that time was that my already depleted levels were drained even more from perceived and real rejection. I lost even more of my trust in myself and the people I had so heavily relied upon to show me love, acceptance, and trust. It confirmed for me that I was unlovable and could trust no one. Love was untrue, unattainable, and not for me, but you know I had come to that conclusion years ago as a child. I did not understand that the “feelings” of love were not the same as actual love. See I struggle with feeling love or knowing when people love me, before the “attack” of rejection came upon me by my community, I had felt accepted and for the first time loved back by many people and even by one person — I had actually felt strong emotional connections between us both. When he too rejected me as a friend and a possible significant other my soul withered.

Being rejected by them was proof that I knew nothing of love and I sure as heck could not understand when someone loved me — ever.

I was very vulnerable when David and I met. However, from his perspective he saw none of this. He shared with me that what saw was a strong confident woman, full of compassion, and direction. He said that I seemed to “glow.” He watched me from afar and felt that I was “out of his league.” Though if you met David with his strong personality it does not seem likely that anyone would intimate him — not many people do. He was right about my confidence and direction; I wanted to be a woman pastor at the time. I wanted to help and serve people as much as possible and I figured, why not as a pastor?” That church, which proved to be one of the most positive experiences in my life encouraged me and were grooming me to be a leader, they never said I could not be a pastor though my mentors did say it would be a bit of a challenge in the U.S. When I left them to move to another state, I encountered so much disillusionment with the community I had been in that the sense of rejection consumed me … Next post leads into some of where David was at during this season of our lives.

I am convinced the glowing part was from the intimate lighting that the worship center had during services. ;-)

To understand a little more about our current transition that David and I have both been going through here are some posts I wrote about our relationship back in February 2011 Just Me, Myself and Cats? and The New Journey.

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Latest Special Interest “Lie to Me”

I am not sure if anyone caught on who has been reading my blog for a while, but I have gone into a slight psychopath/narcissist/liar special interest over the year. I actually, started research about narcissists in 2002. I got caught up in my religion special interest and put that one on the back burner – little did I know that the two would interweave later in my life. I have not shared that much about my religious experience and I am still not sure that I will. It is too touchy and I would feel awful if people misunderstood my intentions. However, I do have a painful history with church and church leaders/people. I have shared several of those experiences on here, but I still have not gone in-depth. I have found that my special interest regarding how the brain works and why people act the way they do has been with me since childhood.

I believe it stemmed from trying to figure out my parents and seeking ways to protect myself from emotional pain.

If I could only figure why then, I could let it go! However, I have discovered that sometimes the whys are unanswerable or the reality of the why may be more painful than not understanding. Although, if I had a choice I would still want to know why because I can work with that — I do not work well with unasnwerables. Though my special interest in human behaviors and mental workings has been with me a lifetime, I still find myself constantly learning something new. I think that may be what keeps my spark going — humans always change, but somehow stay the same! Oxymoron. I have a love-hate feeling about that. I would not want to bind myself to being exactly the same all the time, however; a dabble of consistency would be nice from some fellow humans. :-)

I am garrulous today, forgive me.

I find it interesting how there are vast beliefs and emotions when it comes to sociopaths and narcissists. I had never really given it any thought until I read several things that referred to Autistics/Asperger’s as narcissists. I have my own personal story in dealing with a narcissist (a few actually) that I am not comfortable writing about. I have written plenty about the topic and about manipulators, but I see no need to share some of my personal stories at the time – I indicated as much above, but I do have some others that have been much closer and quite frankly, scarier in my life. I think out of everything that I read the one thing that helped me the most was discovering that they are about “crazy-making.” Their tactics wear you down and eventually strip you of your abilities to discern and trust your instincts.

The constant self-doubt and being molded into not trusting anyone but them causes you to become blind to many things.

In a way you have to in order to survive. They instill such fear and anxiety directly or indirectly with stealthy manipulations and dismantling of your identity that one feels they MUST do whatever it takes to keep that relationship — no matter how painful, demeaning, or agonizing it is the feeling of being nothing unless they are there is too consuming. The fear of abandonment is too powerful. In order to protect any sense of self, no matter how little may be left — you hide it away, but the interesting thing is that the sliver that is tucked away has become extremely acute in detecting unseen things. That detection becomes an impressive emotional reader, lie detector, and has adapted keen abilities in learning how to read people’s real emotions not based upon body language, words, or how they are perceived by others.

There is a constant battle within oneself with the instinctive knowing and the constant state of self-doubt.

I have a theory that there are many of us who are Autistic that have the ability to read people’s true emotions as well because we do not look to what others look for when communicating. In my feeble mind-meanderings, I have resolved that those of us who have been abused could possibly have gained some great intuitive abilities at reading people’s actual motives or emotions because we have had to in order to survive. However, our social confusion and constantly being told that we are wrong or have misunderstood caused us to second guess ourselves to the point of questioning our ability. Some of us, like myself cling to language and rely upon words to navigate though that method will fail. People use words all the time in the wrong context, out of context, laced with emotions which will give them different meanings, inaccurate definitions, and meanings can get lost in translation.

I have found that my means of trying to understand the world caused me more confusion because I spoke a different language.

Even though we shared the same words our intent or definitions were different. I tried to use words because I felt that I could not rely on my nonverbal readings of people. I am not very good at reading body language and I tend to see people’s faces as blurred when I am looking at them. I focus on their lips and eyebrows normally, I do try to make eye contact as much as possible when I remember to let them know that I am engaged, but I cannot keep a steady flow of eye contact. It is too much input for me. My brain gets overwhelmed trying to process emotion, words, thoughts, and all of the images flooding my head with the conversation. I do think in pictures, but my pictures are also, connected to colors, smells, numbers, data collected, fleeting ideas, emotions, music, words, etc …

Since, I am now aware of this about myself I have been able to have conversations much easier.

By that I mean I no longer feel like I am wrong for not looking at a person or when my words get all jumbled and I cannot get them out I allow myself to slow down. I have also allowed myself to stop, close my eyes or look away until I am able to get my words. I used to get so frustrated or overcome with feeling foolish because I-could-not-talk! The negative thoughts would enhance my feelings of inadequacy and fill me with anxiety. Not only did I feel this because I felt overwhelmed, but many times what I was/am feeling from a person’s presence did/does not match the words, tone, movements, or expressions that I do notice on their face. It took me a while, but all this leads into my latest special interest. Have you heard of the TV show “Lie to Me” inspired by the research done by Dr. Paul Ekman? I stumbled upon information about him a while ago, but had forgotten all about it until one night when I was too fatigued to do anything but sit on the couch. I decided to pull up Netflix and was intrigued by the show so I watched it.

After watching the first episode, I went into research mode to find out about this research and methods pertaining to micro expressions and deception.

I was elated to find books written by Paul Ekman, Ph.D. I am currently reading three different ones by him. Yes, at the same time I am rotating the books and making connections. As I was reading I thought how amazing this research and practice would be for Autistics. I wondered if they were using any methods or curriculum to help Autistics, but it was a fleeting thought. Until I found a video that showed some intriguing curriculum in development where indeed they are doing this, however; I can no longer find the video in English I did find it German - sorry no translation. :-) I thought this could be really beneficial to some of us who are Autistic. Apparently, I am a little late to the party because I found several people talking about using micro expression with Autistics – I see that as a good thing there could be some real positives from it. I am not on any real venture here; I am just excited and intrigued about the research and possibilities. (Sharing my ramblings)

I have had a lot of curious thoughts stem from what I have read and watched.

One being that possibly Autistics are overwhelmed with all of the micro expressions that we see, but do not understand. The face and every muscle in the face is telling us something, it is a lot to process – the words are telling us something and we are processing that. The tone and the body is telling us something and it is all so consuming, but it does not stop there we are being infiltrated with all the goings on in our environment. The “typical” person has the ability to process all of that information instantly and if the words do not match the face, body, and/or tone they somehow override the inconsistencies. I get stuck. I get stuck on inconsistency until I finally have to force myself to let it go, easier said than done much of the time. There would need to be much more research to discover whether Autistics are “seeing” all of the micro expressions. The current research being done to track eye movement as an early means of Autism diagnosis indicates that we do not look at people, but at things.

That has manifests a whole other set of questions and wonderment in my mind.

I will not tap into those thoughts because I am in one of those moods where I could go on and on with my thoughts. I pondered the idea of people reading my micro expressions, I tend to have a stoic face much of the time. When I am listening to a person, concentrating, or deeply focused my face can be blank, intense, or I smile/laugh at inappropriate times. How does that affect how people read my micro expressions? People read my face, body language, and tone incorrectly all the time. Much of the miscommunication that David and I have had was/is due to him reading me wrong and inferring incorrectly. I too have misread him and infer incorrectly. Asking questions such as, What does that face mean? Are you upset? What did you mean by those words? has helped a great deal. For me, expressing when I feel his emotions intensely, but I do not understand them has brought much clarity.

In reading about lie detection, deceptions, and how to read micro expressions I found myself feeling that it was a good thing.

I think that it is fascinating and beneficial in many ways, but I also feel that people should not rely so much on those types of nonverbal communication. I believe that it is useful, but I feel that having the freedom to ask directly without judgment, condemnation, and having upfront knowledge of possible emotional responses is good too. I am not always capable of being able to look at people. If I am anxious, overwhelmed, my sensory system is being attacked, social confusion all consuming, and/or PTSD triggers are raging there is no way I can read a person’s micro expressions. Nope, it’s not going to happen. I MUST rely on asking people so that I do not spiral into loops of chaos and fear. I am still in my research mode, but what I have read thus far has given me a boost in trusting my instincts. I have become more social once again; I am out practically every morning going to the Y at the crack of dawn. (Literally, I am up at 4 am and at the Y by 5 or 5:30 am so I can be home before anyone wakes up as to not disturb the ecosystem here.)

I have been more social at the home school co-op, but I have also encountered similar experiences that I did before in that environment. 

Before when I encountered certain types of people, I condemned myself for having certain feelings about them. I doubted my instincts and ended up in situations that caused me to be confused, extremely anxious, manipulated, and used. After reading the information, I have found answers to help me not get sucked into the “why would they do that or am I wrong” vortex. I have the clear understanding that people have many reasons for why they lie, behave, respond, and say the things that they do. I did not have a clear understanding of this before. I had an understanding, but not in concrete terms that could help me understand more deeply. I have also; found that I am becoming even more empathetic and compassionate. In the past, when faced with injustice or downright negative/mean people I could “see” their point of view, but I had a difficult time truly “seeing/feeling” from their perspective.

I do not think that is uncommon for any person. 

When you have not experienced what another person has you can find it challenging to comprehend the whats, whys, and hows of their responses. I still feel indignation, but it moves quickly into wanting to understand and move forward in a positive direction. My latest special interest has opened my heart, mind, and eyes even more to humanity. It helps to understand why people lie this has helped me to understand that it does not have anything to do with me. People lie, manipulate, mastermind all sorts of things daily for many reasons some are not so sinister as others or destructive, but there is no black-and-white answers. People all have their personal struggles and experiences that have molded them into how they respond. I used to take it very personally and think that I HAD to be the problem. (I still struggle) Sure I have my problems and my responses can seem inconsistent or erratic at times, but now I understand why I do that and all of the factors that play into it.

I had unspoken/unknown thoughts until recently that if I could just figure out why people lie than, I could protect myself. 

Lying is so devastating to me – I would much rather have the truth no matter how painful or heart wrenching than to be lied to. But I have realized that sometimes a person’s lie is better kept to themselves. Dismantling the thoughts for the reasons they lied and letting go of the fears that I had done something to cause their lies has set me free from needless turmoil. I believe those thoughts were faulty beliefs I adopted from being abused and being socially confused. I have also, learned that telling “your truth” at all costs without any considerations for others is just as damaging. Certain things should not be said and it is not a lie if you do not say it – yes, I still find that thought challenging.  You cannot protect yourself from the pains and joys of relationships. If we could live in a completely honest world and not be influenced by our triggers of past pains and negative experiences I think that would be ideal, but that is not how the world works. I am not so sure I want to always know when people are lying.

Many things are best left unknown so I have come to learn … although; I could completely change my mind about that tomorrow. HA!

Related items - I watched a lot of videos lately too, I will only share a few. :-)

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The World We Live In …

Sometimes I get lost in our world. I admit, I begin to forget that many people do not have a positive outlook about Autism. I forget that they are hurting so much for their child or themselves as an adult Autistic that they say negative things or speak openly about how much they hate it. I forget that people do not understand and many do not want to understand the point of view from those of us who fully accept that Autism is hard, painful, and downright exhausting a lot of the time – even stirring up emotions of hopelessness, but we choose to be proactive. We choose to seek the positives and pull from our strengths and the strengths from our children. (Those of us who are parents.) I forget that some parents cannot see any strengths. I forget that they too are blinded and exhausted because they are living in their world secluded from adult Autistics like myself or children like my kids.

I forget how easy it is for people to generalize and stereotype all of us into one single voice.

I forget that all of us are capable of generalizing, leading into dehumanizing, ultimately manifesting minds that have created demons out of those who we have never encountered in real life. I see the words of those who “hate” Autism and I hurt. It riles up fear for my kids, it ripples anger at generalizations and the lack of effort people put to truly find out what they hate on, it makes me want to shutdown and never share any part of our life because it seems pointless. However, I refuse to react out of heated and unbalanced emotions. I refuse to turn this into anger against those who have hurt me. At this moment, I am taking the time to think about those of you who hate, who are angered, and who want to be heard for your opinions – I am validating you.

I am thinking of you and your world.

I am dismantling my urge to make you a blur in the face of millions and I acknowledge your pain. I stand here breaking the rules that have been laid upon me about being Autistic. I am empathizing with you. I cannot fully understand your position, situation, the deep-rooted causes for your lashing out, but I can understand you needing something to be angry at – I can understand needing something to hate because you do not want to have those feelings directed at your child. I understand that you love your child and you had expectations that have been destroyed. I understand not having resources, financial burdens, not knowing how to help your child, or worrying about their future – the reality for us is that Daniel may be living with us until we are gone. What do we do if something happens to us or when we are gone?

We have considered this and have come up with options – it is still a concern.

But I know your situation is different than mine. I do not live with you everyday. I do not know what is making your life such a challenge that you need to write such things. I do not know who you are or who you are surrounded by. I do not have a relationship with you nor do you have one with me and that makes it easy to make each other blurs. All I have is a glimpse into your life that you share online – I do not know if you actually behave or respond like this in front of others in your real life or if you simply need a place to vent your pains. I do not know, but what I do know is that you are out there and “you” represents one of the masses. I know that there are many of you out there who do not understand what it is like to be told how wrong, invaluable, and incapable of understanding Autism you are – wait, I take that back. Yes, yes you do know. You have been told that and the reason is because you have told many of us who are Autistic that we cannot understand.

The emotions rise, the injustice flails, the banners are raised, and anger is spewed all over the place with no resolution.

There are no empathetic discussions. We are silenced and you are silenced. We brew in anger because we have been bullied, and shutdown our entire life. Now that we can speak, the group keeps telling us to stop being social deviants. Yet, it happens to you too. We are shifting the social norms and when you get out of line with that the pecking starts. We defend ourselves and you defend yourselves and in the mean time our children are the victims. Our cause and fight for justice gets forgotten and lost in the vortex of emotions. It gets sucked into personal attacks and even more hatred on each side. Autism is not either -or, nor black-or-white. It is vast, unique to each situation and each situation carries it owns co-morbid challenges as well.

This morning I woke up feeling a great deal of anger and pain.

I have been struggling with all of the dissension that has been brewing in our community and many others that I share interests in. I cannot quite understand why there seems to be so much rage filtering through the internet, from Biggest Loser, the creationists vs. evolutionists, the church vs. the unchurched, even specialized diets and exercise groups are battling head to head over right and wrong, yes or no, with us or against us. It is not helping. However, this is the world we live in. We have not changed as humans – we are still playing the same social games and are still locked up in our own circle of yes men and no men without coming to the table with open-minds and empathetic hearts. So today, I sat my kids down to see what their feelings were because all of this is going to affect them. We are handing them this world and they need to be realistic about it. I decided to ask them how they would feel if they encountered people who felt this way.

Here was our conversation.

Me: Hey, guys I have something to ask you.

All: What is it mom?

Me: Well, I would like to know how this makes you feel when I share it with you so please, think about it and let me know. Some people think autism sucks, they hate it and they wished that it would go away.

(Audible gasp from Ariel and Joshua.)

Both: What? Why?

Joshua: No, no autism is great.

Me: Ok, can you tell me how you feel when you hear those words?

Joshua: I feel angry and I feel sad.

Me: Me too, buddy that is what I feel, but I am not sure I can exactly explain why.

Ariel: I feel upset, but I cannot explain why.

Daniel: What did you say? (Jumping on the couch and giggling)

Me: Daniel, some people feel that autism sucks and they do not like it.

Daniel: What does autism sucks mean?

Me: 
It means that they feel that it is a bad thing and they wished that there was no autism.

Daniel: I like autism.

Me: How did those words make you feel?

Daniel: 
(still jumping on the couch giggling) It makes me feel upset, I think.

Me: How would you feel if someone said that to you?

Daniel: I would say I do not like that. Why do they hate autism?

Me: Autism is different for every person. For some people it can be really hard for them and/or their children. Remember when you had rough days for weeks and weeks and could not tell us what was wrong? That was hard and you told me it was scary too. Think about your rough days now, do you ever wish you did not have them?

Daniel: 
Yes. I do not like them.

Me: For some people it is like that all the time and for all kinds of reasons they hate it. Do you think that when someone says they hate autism that they hate you?

Daniel: Yes, I think so.

Joshua:
 Yes!

Ariel: Yes.

Me: Why do you guys think that?

Joshua:
 It hurts our feelings.

Daniel: Because I am autism.

Ariel: I do not know why, I just feel that way.

After our conversation, I went on to explain to the kids that many people who say they hate autism are referring to the responses (behaviors) or the pain/suffering they feel or see their child/adult Autistic are going through.

I want them to understand how others feel and why they may treat them in certain ways. In our world, I cannot forget that it is full of different pains, heartache, circumstances, life experiences that cause us to have intense emotional responses. In the world we live in it happens to be very Westernized which, can be extremely polarizing – I am grateful for living in our country, but we are easily swayed by fear, conspiracy, marketing, and have a propensity to stay within our cliques. As humans, we have a tendency to cling to what we know and fear what we do not understand. As a society we have proven that we can make enormous changes for the better when a group stands up against injustice, we can make life for those suffering a better place when our focus is not on the blurs of the millions and our energies are spent on grabbing hold of those faces with tears saying, you matter, now let’s go turn our anger and hatred into something proactive and beneficial for all.

I will not groom my children to hate autism.

Even if we do not say the negative things in front of our kids, they feel it. Many of us who are Autistic are heightened to the feelings of others, but there are some like myself who cannot articulate what the emotions are – I simply feel negative or positive and learned growing up to automatically assume that negative emotions were caused by me and my nonconforming, different behaviors/responses. I will explain to my kids what their challenges are and seek ways to utilize their incredible minds in whatever capacity possible. I was not sure how much Daniel understood throughout most of his young life, I always believed that he understood and I tried my best to be positive. I will not sit here and say that this is an easy task, some days it is not. I have my own struggles.

I chose to seek out what I can do and what I can change to have a better quality of life.

If my kids struggle with emotions of hating autism when they are older, we will talk about it openly and they will have my full support. I will do what needs to be done to help them. It may require things that I would not want to do personally, but we will try. (Because they are not me.) However, the things that I hated had to do mostly with not understanding my differences. I hated and still struggle with my generalized anxiety, depression, PTSD, sensory sensitivities, executive dysfunction, but my Autistic mind gave me the drive and the passion to figure out what was going on in my mind. So do I hate Autism? No. Have I hated feeling isolated and alone? Yes. Have I been in great turmoil and pain because of social confusion? Yes. The main issue being that I was trying so hard to be someone I could never be. I hated that I could not live up to social expectations and stereotypes that caused me to hate being me.

So when I see people have such negative reactions it transports me back to those feelings of self-denial and self-hatred.

I am not saying that they are to blame, but that these are my triggers. I get where they are coming from, but I wish they would take a moment to realize that autism is not something separate from me or my kids. We cannot make it disappear. We are who we are and I have fought too hard through abuse, bullies, stereotypes, generalizations, and coming to terms with self-acceptance that to feel that trigger overcome me is upsetting. It angers me and breaks my heart. I wish that those who feel this way would stop for a moment and realize that their generalized statements are blurring ALL of our faces who are Autistic. You are forming us into a straw man. You are demonizing our attributes. We are not a disease, we are people. We are not invisible and those of us who can speak will.

Those of us who have no words can share insights and perspectives through writing devices, art, music, poetry; we can share some knowledge about autism.

Are we experts on your kids or your situation? Absolutely not, BUT some of us are willing to hear you and try to understand. I cannot speak for the whole community, but I would venture to say that MANY of us would be willing even to the point of letting go of past pains and destructive words just to be able to come to the table of discussion with open minds and empathetic hearts. This CAN be the world we live in. It is the world I am creating for my kids. How many are willing to do this for the sake of our kids and for the sake of adult Autistics who need to be seen, heard, and valued? Sigh … We need your support and many of us are willing to offer ours to you and do offer it through our writings. We are able to give you insights and understanding to a world that is different from yours. We have tried to understand your world – we have lived in it every day and we emphatically try daily. Is there a way to bridge this gap? That is not a rhetorical question.

Can anyone find a way to make this work? I seek hope … but I am also, realistic and understand human nature. 

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“But I Love It So, So Much!”

I have decided to read my posts about the kids to them before I publish and see if they feel comfortable with what I am sharing. All three kids were present as I read this out loud, it was a happy experience for all of us. I also, found that it helped Daniel with recalling events and talking about his feelings. Hm .. I wish I would have started this sooner, oh well I will now. 

This was Daniel’s third week of music therapy. The first week he was incredibly anxious, but that had more to do with all of the changes that he had been trying to transition into from my new schedule, his new schedule, and David’s new schedule. He was “happy anxious” about going, however; when we went he wanted me with him because it was new. After a fabulous first session, we ventured to the lobby to head home. I asked the accounts manager some questions and Daniel immediately went to a solar-powered sunflower that was sitting on her ledge. He asked me a ton of questions – I was not aware that so many questions could be asked about such a little object that had memorizing dance moves. :-)

Daniel refused to leave for several minutes, I was not sure if I was going to be able to get him to part with that little sunflower.

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It became a bit awkward, but you know Daniel’s feelings and handling situations like that in positive ways take precedence over anyone else. Frankly, I no longer care if other people are uncomfortable. I am referring to a parent that was in the lobby waiting not the staff or therapists. They were all smiles and tried to hide their “ok, that is a lot of questions and quite an intense interest in a solar-powered sunflower” faces. We could not stay there all day so I told Daniel that we would look it up on the computer when we got home.

He begged me on the way to get him one.

This concerned me because he was getting too intense about it and could not think of anything else. I pulled up the sunflower and let him look at it when we got home. At this point, Daniel was saying things like “I need it. Get it for me.” We were not in a position to buy it. Literally, I know the thing does not cost much, but our funds were strapped to the point of not being able to get a $10 gadget like that a couple of weeks ago. He could not understand this and the more that he got upset the more that it became clear that I could not get it for him. Somewhere in the midst of anxiety he had latched onto this gadget and by 2:00 pm he was ruminating to the point of sobbing because he wanted me to get him one or go get the one at the music therapy office. I was baffled. Daniel had never responded like this with any object — let me rephrase, Daniel has never been able to communicate this with his words before, he may have been feeling the same intensity, but the sobbing was new.

 At one point, Daniel said to me “I cannot live my life without it!” 

It broke my heart to see him so upset and say such things. However, it was also one of those moments where I was so thrilled that Daniel was using those words in that context. I know he got a similar script from Joshua because Joshua uses extreme words to express himself. He does not mean a lot of what he says, and half the time I am confused because I have no idea where he got such ideas. He is such a sweetheart and has a sensitive nature and the world impacts him greatly. He expresses that in the only way he knows how – we are all learning around here to find our balance and gain better emotional regulation. [And always will.] It’s hard when you are not sure what you are feeling most of the time. I digress … a lot. When Daniel continued to tell me how he could not live without the sunflower I asked him if I could hold him for a little bit and talk to him.

He let me until he calmed down.

As things settled I asked, Daniel why do you feel that you cannot live without the sunflower? He said, “Because I love it. I like the way it moves, I love it so, so much.” I told him the main reason why we could not get it and explained that the other one belonged to the lady. Then, I explained to him why I did not think it was a good idea for him to get the sunflower. I reminded him of how certain movements get him too excited. He looked at me with his big brown eyes, filled with little tears and such heartbreak that I felt like the worst mom in the world and he said, “But I love it so, so much.” I have to be careful with certain items that I get him because particular movements, lights, and objects can cause him to get over stimulated which is not a good thing. He does not easily come out of it and he will ruminate – seeking objects that feed into that stimulation.

He loses his words, ability to focus, his eyes glaze over, he does eat, and he does not sleep.

Some things I cannot allow him to stim on for his own well-being. I have some stims as well that I have to limit or eliminate all together for the same reasons. Actually, everyone in this household does. However, with the sunflower I felt that it was not necessarily the movement.  Daniel had never expressed such deep connection with an object even though he may have similar wants or responses to items he had never been so attached instantly. I felt that the object was giving him a penetrating calm for his anxious mind. He was seeking something to focus on to help with his transitions with all of these changes. I decided to look for an object that was similar, but with different motion. I asked him if that would work and told him that we could go look at some solar-powered gadgets. He felt better.

We found a solar-powered frog on a swing.

He has no challenges with back and forth movement so I asked him if he would like that when we were able to buy it. He said yes, and the rest of the week went much better — filled with questions of when he could get his frog and reminding me of how much he still loved the sunflower. When we went back to music therapy the next week he wanted to see the sunflower, but he was happy because he was going to get the frog. We did need to stay for a little while, but he was much better with leaving it. He also, went into his session without me that day. It was his idea he said, “I will go in by myself.” I was happy that his anxiety had eased. On the way home he said, “Can I go to music therapy forever? I wish to go to music therapy forever. I like it so much.” I told him that we would do whatever we had to in order to make sure he could keep going.

He said, “Good.” :-)

His frog came in the mail the next day and he was filled with joy. He has taken it everywhere with him since he got it. He has also, told me that he loves his frog too. Yesterday, he went to his music therapy and he went to see his sunflower right away. Then, he happily went to his session AND composed a song about instruments with his therapist. The smile on his face when he comes out of each session is like singing angels in my heart. (Did I just say that? Geez, I did. I am a cornball sometimes.) One of the therapists mentioned that they found the sunflower at the dollar store across the street. Guess who had to go to the dollar store? She did not realize how much Daniel had connected to the sunflower. We went – no sunflower. However, we did find little valentine solar-powered cupid devils.

He wanted one; we got it along with one for Ariel and elephant one for Joshua.

I will try to make this shorter, it was not satisfying and Daniel expressed to me how much he wished he could have the sunflower. After watching him with the little devil cupid who had similar movements, I decided to get the sunflower. Yes, the sunflower should be here in a couple of days. I am not sure why he has connected to it like this, but he has and he cannot let it go. I told him that he would have to take breaks from it if he could not leave it alone or if it caused him to get too stimulated. For now he is ok with this. It is difficult at times to know when and when not to give him the stimming items that he needs. I am not sure what it is about the sunflower, I happen to have an attachment to sunflowers so I find it interesting that he has attached to it. We will go with it and see what happens.

Some remarkable things transpired from all of this.

Daniel has never sobbed over anything which, I interpreted as him truly caring about it a great deal. Whether it is the sunflower or what the sunflower represents to him it does not matter, it means a lot to him. He has never used words like, “I cannot live my life without it.” He has not been so open to allowing me to comfort him and explain things to him when he is in such an emotional place – although, this was kind of a new emotional response. In the past, he was not able to see the item again that triggered similar responses of “want.” I had to call ahead of time at a few different places and homes before we came over to have people put the items away until we left. He was unable to let it go and triggered an upset if he still saw the items. I am over the moon to hear what Daniel feels. I am excited to see how music therapy helps him. I will end with Daniel’s own words from yesterday.

“Mom, I love music therapy. I love going to there. I love the music. I love my, what is her name again? Her, I love her. I love going because of her and the instruments, and because I love that sunflower so, so much.” 

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It’s About Trust

This blog, for the most part has been about my journey. My kids are part of that and I have written about our life. I write because it helps me, I had various reasons for why I started a blog one being to keep record of our lives. It was confusing for me as a child to try to make sense of what was going on with my parents. I wish I had a record of what my parents were going through as I was growing up – it would have cleared up a lot of confusion, hurt, and emotions that I did not need to carry. I am not sure if this will help my kids or if they will ever want to read it, but it is here for the time being. There were other reasons – several – I wanted to find others because I was so alone, I wanted to know that I was not the only one. I had hoped that my life and the things that I have gone through had some purpose in this life I felt that by sharing it could be helpful, so I shared and I keep on sharing…

Over the summer leading into recent days, my thoughts continued to wander and ponder about the things that I shared on this blog.

I am not referring to what I write about myself so much, but I am referring to what I share about my kids. I know that I tried to be considerate of what I tell people on here and in our home life. I believe that I have done fairly well at not over-sharing about them (for the most part.) although; in the beginning years I may have shared things that I would not feel comfortable with now. I really cannot recall at the moment, but I do know that I have always had the attitude that if it could feel embarrassing to my kids or even humiliating – whether they could understand or not – I did and have not shared it. I write about them and I have posted pictures because I am extremely proud of my kids.

I think they are the tops!

I know, most parents feel that way and many times that is why we share. Not to brag, but to talk about their great deeds and wonderiffic personalities. Or to let others know about their progress and to give hope. However, over the course of time there were several posts that I read from blogs, Huffington Post, and facebook etc …  They were from various perspectives from parents and Autistics alike in regards to what parents share about their Autistic children. It really got me thinking about what I have shared and it has helped me to remember boundaries when I do share. There have been several posts that I have written where I asked Ariel and Joshua specifically if they were ok with what I wrote and they were even excited that I had shared about them. I tried to ask Daniel, but he did not really understand. However, I have tried to be cautious about what I share and when I do say something such as “he is having a rough time” I do not share the details. I do not see how that benefits anyone.

I have had times when things were too much for me, I still do.

If I feel frustrated or overwhelmed I ask for help such as requesting that David just let me tell him what has been going on without any “fix” lingo, believe me before I share anything with anyone I have exhausted all of my efforts – I just need to know someone understands. I will post something that requests prayers, happy thoughts, and positive vibes because it helps me to know that people are there – I am not alone and I can redirect. It may not work for others I understand that. I may have shared in the past, responses or experiences that no longer happen, but if I did it was out of an emotional state of exhaustion, anxiety, and feeling helpless or in hopes of helping people understand. Though that is no excuse – I am not perfect. After reading Social Media and Dignity- When does sharing go too far? (I recommend reading it, it’s a great post.) I was flooded with thoughts. I spent the day, looking at my kids and wondering how they truly felt about my blog and the things that I have shared publicly.

I was transported to the times when I had people share stories or things about me and the emotions came over me.

Some were of embarrassment, some made me feel proud, others made me feel shameful, or ignorant. As I went through those moments, I also thought of the intentions of those people. It was clear those who were doing it out of motives that were filled with love or endearment and those that were purposefully trying to make me feel badly about myself. Worse yet, they were doing it to make people feel sorry for them because I was such a handful and uncontrollable child. My kids know that I love them dearly – they trust me. THEY TRUST ME! That thought right there fills me with an intense sense of responsibility. I have been given this gift of trust from my children and it will be me (and David) who will help influence how they understand what trust is and what it should look like. I have made mistakes and I will continue to do so, but I am honest with my kids about that.

When I make a mistake I tell them and I apologize – we learn from it and we move on.

I ask them to do the same as well, so you made a mistake now you know, it’s in the past. We learned something and we move on. Yet, that overwhelming sense of responsibility hit me like a ton of bricks the other day. I decided to ask the kids their thoughts about my blog and the things I share. Ariel was quite easy. I asked her if she felt alright with the fact that I write about her and share things about her on my blog, her exact words, “Yeah, I don’t care.” I was not sure if she truly understood so I asked do you mind that I have shared things about your responses when you get overwhelmed or upset, like when you shutdown? She said in her matter-of-fact tone while darting her eyes at me, “No, I do not care.” I asked Joshua the same thing and he thought for a moment then said, “I am ok with what you write.” I had read several posts to him that I had written that involved him before I posted them in the past, but I wanted to be sure he was truly alright with it.

I asked him too if he was ok with me sharing some of his responses such as having extremes with emotions or sensory overload.

He said he was fine with that and Ariel chimed in saying, “Mom we don’t care, we trust you.” I later asked Daniel the same types of question only explaining it with more detail. Daniel said, “Yes, I think I am ok with that.” I went into further explanations of what I share and what I do not share. I gave him a specific example that I will not post and he asked, “Should I not be ok with that? Is it only me?” I told him that he was not the only one and that he should not feel embarrassed or uncomfortable about it, but it is probably something that we should not share publicly, only with family members who know us and understand. He said, “Oh, yes. I am ok with that, but I do not think I am ok with it on your blog.”  It opened up communication that we have not had before. I am not sure how much he understands about a blog and the internet, but he does understand sharing with others who are in our life.

I broke several things down into specifics.

Daniel was able to share with me the things that he was not sure about, things that he was ok, with, and the things that he never wanted me to share. He used examples of past reactions and responses and told me that he did not like it when people knew about it. He expressed to me (though he could find the exact words) that he did not like it when people saw him or knew when he was upset. I asked him if there was any specific reason and he simply said, “Um, no I just don’t like it.” (I do not like it either!) YAY!!! It was incredible. Granted you are only getting a snippet of my conversations with the kids, but I think you get the gist of it. It was relieving too because as far I as I can recall I have not shared anything that would make him or Ariel and Joshua feel uncomfortable based on what all of them expressed to me.

It was a moving day for me in many ways.

I think something that really made an impact on me was how much my kids do not feel shame. There are many things that each of them have done and continue to do directly related to Autism traits, sensory issues, or learning challenges that I too did/do and was made to feel shameful, embarrassed, or wrong for while growing up; as I spoke with my kids they reflected an attitude of self-acceptance and a clear understanding that their difficulties and responses are due to circumstances, how their mind’s process, and their unique perspective/perceptions of the world and situations. They have not taken on the inaccurate feelings that there is something wrong with them or that they should feel badly about themselves. I have a new understanding, however; of the responsibility of my children’s trust.

I do not want to lose that trust and I will make new efforts to try to ensure that I do not.

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It’s Time …

I have been contemplating for several months about what I want to do with my life. I have been in a certain kind of limbo for over a year – clinging to what I knew because I was afraid of the unknown. Truth be told, I had not given myself much opportunity to think about what I want to do. We have had so much change and transition that I needed routine and sameness as much as possible. I have spent over four years writing on this blog and I was not ready to stop what I had been doing. It was my best friend, comfort, place of solace; it led me to seek all sorts of things, ideas, enlightenment, and people. I have gone through the process of fully accepting Autism, discovering and rediscovering things about myself, healing, and dealing with some very difficult things from my past. I do not feel finished, but I do feel that I am in a state of redirection. I have found myself no longer able to write as I had in the past.

At first, I felt sad.

I felt as if I was going to become invisible again – then, I realized that in reality I have become more visible in the “real” world. I have become more present over the last few months. By present I mean more engaging and interacting with people in my local area. I have lost contact with many of the people that I connected with online in the beginning. I still talk to a few on occasion, a couple I do have regular contact if not by message then via facebook posts. However, I simply do not have the time to spend online any longer. My posts have lessened, my poetry posts have not been as frequent, and my interactions on places like facebook have been less too. My family needs me, I need to be present in my real life for myself – I had used my blog as a means to escape at times – not always, but I did sink into a pattern when I was struggling with my depression.

 It was part of the problem. 

Though I had been processing and dealing with a lot, I was still under so much stress and feeling so isolated that my only comfort was in my blogs. However, social media would feed my anxieties and with all of the riffs that continue to saturate our Autism Community it was eating away at my spirit. I finally concluded that I needed to step back and take a break for a while after finding myself so conflicted. I get so emotional from those things and I have a challenging time bouncing back. I found myself rather emotional and upset when in my other community of those who have been abused and victimized had conflict as well recently. It made me want to flee the internet all together having both situations happening simultaneously. Of course, I have not but it made it clear that I need to focus on my other interests.

 I have decided to hold off on any in-depth type of posts until I feel I am ready to share.

I have a tendency to put pressure on myself that no one else does and I need to set myself free from that. I do want to and plan to write about certain topics, but it takes so much out me of to be vulnerable. In the midst of the changes I am making on the home-front, I decided that I need to keep my vulnerabilities at lower levels on the internet. I have a new direction and focus for my life. I still write and will always write, I am determined to finish my fiction book this year and either self-publish and/or attempt to try to get a publisher. That is one goal. I plan to devote more time into schooling with different approaches – it is getting a bit stale around here. I have settled into the semi-public schooling type of teaching and I cannot do that. The kids and I need our zest and joy of learning to fill up our lives once again. I need to focus on that much more.

We also have state testing coming up in couple of months and I want to help prepare Ariel and Daniel as much as possible.

I have several things that I want to get involved in locally for homeschooling. A woman that David met in his many social outings that he has been going to has a son diagnosed Aspergers who is 9 years old. She helps head up the 4-H tech club and I want to get connected with her, as well as several other women who are doing similar things with ASD children. They seem to be more in line with our beliefs and feelings about Autism. He has met so many people around town who have been very open and accepting when he shares about our family. By him opening up and talking about our lives he has found quite a few families who also, have special needs children. There are several who are Autistic and I am looking forward to meeting the parents and the kids.

I have to say it has been a mixture of feelings with David becoming so social and transitioning into an Autism advocate. 

(I do not “have to say” I suppose … ) Part of me is overjoyed and excited the other part is frustrated and thinking, “This would have been nice years ago!” Those types of thoughts are fleeting though and I am appreciative of the change and enthusiasm that he is showing. My other new direction is going into my health and fitness special interest. I have rekindled my passion for working out, motivating others to live a healthy life, and learning about the body. My plan is to work on getting certified as a personal/group trainer this year. However, I want to get additional certifications, a couple being  youth fitness and inclusive fitness. I am not sure what I plan on doing, but for the time being that is my direction. I am good at it and if anything I can help do P.E. classes or offer certain workout group classes for kids at a home school co-op. Who knows?? Most importantly, it will help me with my own kids and discover better ways to help them physically.

I am scared and excited all at once.

David and I have discussed all of this and he is supports me 100%. We are not sure about the financial part of it yet, the first part was me making the decision and deciding that I have put off my desires long enough. This is not something that was sudden; I have wanted to be in some sort of fitness genre for decades. I love it, I am good at it, and it is something that I have talked about forever. However, I stopped much of that when David and I got together because he despises working out. We have found a healthy trade off – I encourage him in his interests and he encourages me in mine. I still plan on writing posts on here when I have the time, you never know with me. One day I could write a dozen posts and the next week have nothing. I think that the posts I share will be about the great things going on here. Although, I really have no idea, I may feel like sharing my other current special interests within the next day or two. ;-)

I wrote out this post to help myself and to let those who have been following me for so long what is going on with me.

I need to set myself free from negative feelings such as being filled with thoughts like I have not accomplished enough because I am not doing what everyone else is or because I am using my gifts in other areas besides writing – writing and writing and sharing on your blog are two different things, Angel. (Had to talk to myself for a moment.) I want to savor home life for a while and transition without getting sidetracked from the millions of things that grab my attention – like now, I am jumping to another topic – I changed my title to Mind Retrofit: Upgrading to a Divergent Life. I am not sure if anyone will notice or wonder why I did. In case anyone wonders, I felt that upgrading to an Aspergers life, now has a different tone to it; as though it is somehow superior. The intention was not that at all. I find the word divergent to be a better definition of where I am at in my current state of mind. Since starting this blog, I have learned how to be more accepting and empathetic toward those I did not understand – that includes me.

I have nothing more to say for time being, but I watched this yesterday and several things resonated with me – I thought it was worth sharing.

Sally Kohn: Let’s try emotional correctness

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An Email To The New SLP

Right after Thanksgiving break we were taken aback with the sudden loss of Daniel’s SLP. (Speech-language pathologist) I received an email the morning that they were to return simply stating that she would no longer be at the virtual school and would no longer be Daniel’s SLP. This was a shock because she was so excited to return and continue to work with Daniel. The last day was an incredible speech session. Daniel has progressed so much working with her. There was nothing I could do it was over and we were at the mercy of the school and the therapists that they use. It took about two weeks to get him set up with his new SLP. I had my concerns about her, but have been trying to be open-minded. They only met a couple of times. I found it odd that she did not ask me anything about Daniel prior to meeting with him or afterwards.

She just went right to it doing whatever she does with all of her kids.

I am not sure if she has worked with a child like Daniel. He is a mix of the spectrum that quite frankly, I have not read many other people speak of. It is difficult for me to put into words, but Daniel is basically bouncing all over the Autism spectrum. That is the best I can do. He does not have fixations the same way that others do. He does not stay interested in things obsessively for long, just like his sensory challenges changing on a daily basis, so can his interests. He has some that stick with him, but he does not consume them the way that Joshua or Ariel do. It is hard to explain, but that is just another reason why rewards or withholding does not work. Not that I use that method, but I do know that the school and therapists have attempted to do that with him and it failed.

Daniel is about relationship.

When Daniel was completely nonverbal, I found the only way to get him to communicate was to be actively involved in what he was doing. Active took on a different action some days. One day it would be me sitting in the same room with him. Other days it was with me next to him. Then, there would be days when I did what he was doing I paid attention to how he responded and I did not push. He was responsive to this and our relationship started to develop to the point that I could figure out what he wanted more so than not. There was and still is the “not” days. That is ok, I have my “not” days. For instance, today I have no words or idea to how I feel. I know that I need something, but I am not sure what it is … I have to wait for my brain to catch up to my emotions.

However, I knew what I felt when interacting with Daniel’s new SLP today.

She was misreading him and trying to pressure me to do what she wanted. I would not budge. My priority is Daniel and his needs. It is much easier for her to bend to how she does things and work with him in a positive way to help him transition. It is much more challenging and it induces unnecessary anxiety in him to force changes. He has been on school break for two weeks, coming back to mid-year testing that gives no indication of how many questions are on the test because they are on the computer. I normally print out tests for him because it is much easier for him to process I cannot do that with these tests and I cannot tell him when they will end. Anxiety much? Visual processing overload much? On the first day back, he had to meet a new OT and was unable to say good-bye to the one that he had for over a year. He bonded to her and his other SLP.

He is sad.

He is grieving though no one seems to consider that. He does not know that he is grieving, he is just upset and does not understand why or how to process it. The last OT wanted very much to meet and do a good-bye session, but her schedule would not allow. I know that they have jobs to do and their schedules are full, but I really wish that people would understand how difficult this can be for children – not only special needs children, but all children. They bond with their therapists and teachers, even I had made certain connections to teachers and many of them I did not care for one iota. :-) It was hard for me to transition to each new grade and meet new teachers and kids. It was sad for me to lose a teacher that I was fond of and I would grieve the loss. I would also, feel the anxiety and fear of not knowing my new ones and then, trying to establish some sort of relationship with them.

Child hood is not easy; I know that many kids can bounce back from leaving or getting a different teacher.

For us, it is harder especially if we have made a connection and developed a positive relationship. I decided to write the SLP an email giving some insights about Daniel in hopes of improving the transition and to let her know I am willing to help in any way to make this a positive experience for Daniel. I am sharing here as well in hopes that maybe it will help others who have not seen it from this perspective. I am not angry with her I am just frustrated at the situation and feel unheard. I do not think the SLP is wrong, I think she has her methods and possibly they work for other kids, but I know that they will not work for mine. My intention is try to help her and Daniel be successful in their sessions and for him to continue to progress as he has been. I really hope it manifests into a positive interaction and opens up communication and understanding.

Here is the email. 

Hello,

I thought it would be a good idea to share with you some things that may help with sessions. Daniel does not respond as some children do with a reward system. It does not work with him. It can work for a period of time, but it will not last. He does much better with connection than, with reward or withholding. He does not respond to reward he responds to connection. He may actually regress or not be as responsive through those methods.

For him, the show-n-tell is about connecting to you so he can work better with you. He feels that sharing something that he is interested in or cares about and you doing the same with him is building trust and comfortably. It lessons his anxiety and calms his mind in order to work with you. He does not respond to withholding. It confuses him and he does not understand the purpose. It spirals him into confusion leads to anxiety setting his mind into a state of “fight or flight” and unable to focus.

Daniel is very willing to work many days, but with all of these new transitions which are emotional and difficult even for a child who is not on the Autism spectrum, it will take some time for him to ease into it. I will do my part with helping him transition into the way that you prefer your sessions to be, but I will need time and I would like it to be as positive an experience as possible for him.

If you have a suggestion of “connecting” with him in another way before sessions start I would be happy to help the transition from the old routine to yours if you let me know. I can create a social story and help create a new script for him; I have already been working with him about every teacher and therapist being different. The real issue here for Daniel is that he was very much connected with Ms. L and his OT. He has now lost two relationships and people that he bonded with. I know that he is putting forth efforts to try to establish a working relationship with you because if he did not want to he would not respond at all.

Another bit of information that may help is that when Daniel is focused on specific things such as the colors of the checks it is not about that, it normally has to do with confusion – though you have done your sessions a particular way before he has not had enough sessions with you to override the script that he has in his head that Ms. L and I established. He did the same type of routine for over a year that script has been his source of comfort and connection.

He was looping about the confusion of old routine while, trying to redirect himself into a new routine. This caused him to get jumbled in order to try to stop himself from going into a meltdown he fixated. I saw today as a triumph for him despite at the end he was starting to get upset. He achieved a lot on his own; he used his words, and continued to try to communicate with you. That is huge for him. In the past, he would have shutdown completely or gone into a full on meltdown. He was not upset at you he was upset because he felt he tried yet, because he did not get to finish the plan that he had in his mind he was left unfinished, open-ended, any unresolved tasks cause upset.

When Daniel begins to get fixated there are numerous things that can be contributing, he is not being insubordinate. His sensory challenges affect his ability to process and he gets frustrated. This can look as though he is misbehaving or acting out on purpose. He has vision processing challenges reading for him on certain days takes more effort and strain. The weather has changed drastically and he is having problems with sinuses this affects his eyes and his ability to read.

He has auditory processing challenges so when he asks repeatedly what are you saying it is because the words are getting mixed up and confused in his head. He is not hearing them properly. At those times it is best to talk to him slowly or ask him if he understands what you mean. Sometimes it only takes changing a couple of words and he is able to process. With Ms. L they were working on communicating when he was having these challenges instead of assuming that he was being unwilling. The attention was on asking him questions as to why he was having challenges this helped Daniel find words and he was learning to express himself better. I think that may help in the future.

I am willing to give you as much information about him to help the sessions be successful as possible. Please let me know if there is anything I can provide to do that. I am always willing to work with the therapists and follow through. I just need to know what is expected/needed and how we can work together for the same goals.

I hope this gives some helpful information and please let me know what I can do help this transition on my end.

Thank you,
Angel

 

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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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