Tag Archives: autism

Preparing For Fall (Winter) Time Blues

Around October, I always start to feel down. The depressive thoughts creep in before I even know what hit me. I love fall, but for some reason I am saddened by it as well. When the rush of the cinnamon, nutmeg, and pumpkin spice smells fill my nostrils the gloom begins to cloud into my brain. The sight of pumpkins and gourds trigger emotions from my past. However, at the same time the beginning of fall is a great joy to me too. I enjoy Halloween’ish type of things. All the magnificent colors and the breezes that cascade over my flesh feel so wonderful. I like the things that lurk in the shadows, LOVE black cats, (used to have two) full moons, bats, and all the other sorts of things that pop into one’s mind when thinking of “Americanized” Halloween celebrations. :-)

My happy-sad state stays throughout the winter.

Then, around March I start to feel a little bit of my chipperness come back. When fall ripples through I begin to see the world differently – literally my eyesight has like a nostalgic haze that covers everything. There seems to be a slight buzz as though the colors all have come alive in some new way. Their sounds become crisper and louder. They move in slow motion type of tracers (no doubt my synesthesia plays a role in this.) and my days feel like I am in a movie all the time. The state of feeling like nothing is real, but it is utterly real simultaneously. I find it difficult to describe. I have tried on several occasions on here, but I still have not found the most accurate of ways to explain it. I do know that part of this could be from the MANY triggers I have from the holidays.

They assault me in all directions sensory, emotionally, and physically!

This month has already started with family triggers. This coming weekend family is coming in for the big half marathon. My dad and one of my sisters, along with a couple of other family members are running. This side of the family is so competitive – competition makes me uncomfortable and fills me with anxiety. Unfortunately, the sister that is coming is one that I have many triggers with – I find her incredibly confusing and abrasive. I have not seen her is several years which, gives me additional anxiety. However, I am determined to not allow her behaviors or snide comments affect my responses or my mood.

I really have no desire to engage with her.

Every time I think of possible scenarios, I respond in the same way – with no response. Before when my mind would rush with possible situations, actions, or words being spoken to me I would think of all the possible things, I could say to counter her or protect myself. I have not done that and my mind keeps thinking who cares! Why do I care what she says, she does not know me. She thinks I am a freak. I am virtually nonexistent to her unless my dad pays attention to me or other family member’s acknowledge me then; she “remembers” that I exist. So I really do not need to waste time on thinking of the “what if’s.” It is only a few hours on one day out of my life.

I will expect any possible thing to come from her and not worry about what she may or may not do.

Who knows, maybe she will surprise me and it will all be pleasant. Though, she is consistent so it is certain that she will behave in the way she has her entire life. I no longer need to try to figure her out or protect myself from things that have no bearing on who I am or what I do. I did not realize how much of my depressive thought could be stemmed from the multitude of anxious thoughts I have in regards to family dynamics. The holidays are bittersweet for me. I enjoy being with many of my family members. Despite the fact that no one really acknowledges autism. :-/ Baby steps?? However, they are very loud, huggy, competitive, sometimes very crass, opinionated, and can be quite self-focused.      

They are also, very generous, caring, funny, talented, and quite entertaining to be around.

This year, I have decided to make changes in preparation for the weather and time change, along with my mood change. I have added several more workouts to my week to help me transition into the fall. It has helped me a great deal. I added more intense physical workouts instead of only cardio – I have seen a big difference in my transitioning from an anxious state to finding my “calm” again. I have quicker recovery time. I was doing one spin class (stationary bike) and piloxing, but now I have added a boot camp on Wednesdays, TRX which is “Suspension Training bodyweight exercise develops strength, balance, flexibility and core stability simultaneously.”

TRX has helped me with my “clumsiness”, vertigo, falling, and running into things.

It has helped my core muscles build up to help my balance and lower back pain. I had no idea that it would help me so much, but it does. I have a hard time staying in the suspensions, but I am getting better each time I do it. My new favorite workout is called Kravfit. The best way to describe it is to say that it is a mixture of martial arts, kickboxing, bootcamp (circuit trainer), and self-defense. Oh, yeah! I love it! I am not going to be able to do all of this during the winter months so my plan is to continue three out of the week Monday, Thursday, and Saturday. As well as rotate TRX and piloxing for a while.

I have finally found a diet that is working for me so I eat the same things everyday for the most part.

I have many difficulties with proteins, dairy; many processed foods make me feel drained and tired. I stick with plain veggies, salads, chicken and egg whites. However, this does not bode well when you are burning a ton of calories so I am trying to pump up my caloric intake. I made changes several months ago with my diet and noticed a change in my anxiety and my fatigue. I started taking vitamins and some supplements too that have made a difference for me. I have never been able to take vitamins without stomach problems or other physical reactions.

I was excited to find some that did not cause me such problems.

They are gummies the Vitafusion™ brand MultiVites™, B-Complex, Vitamin D, and Omega 3. I get the Target brand and they work well too. (I do not get any kickbacks for sharing I thought others might have similar issues as I do with taking vitamins and supplements – if they do not make me sick that is awesome! I am highly sensitive to those types of things.)  I still have anxiety (A LOT) and get fatigued, but the change is the length of time that I am suffering from some of the symptoms. The changes in my thinking (practicing mindfulness) have helped in this area too, but that leads me back to my first thought – October brings about depressive thoughts. I am happier during the summer because I love to be outside and I spend most of my time outside.

When the cold comes, it is like daggers attacking my flesh all the time.

The dreary sky for days and days can eat away at my jolly mood and I can feel myself sink into negative stimming patterns. They are connected to family, triggers, and other traumatic events that have happened to me during the holidays. Holidays do not represent fun, festive, happy times they represent pain, tears, isolation, and feelings of awkwardness, feeling wrong, unwanted, and utterly confused. I have managed to work through each year to gather many happy memories since my kids have been born. We are creating our ways of celebrating, but the pain is still there. The trauma is still there and when I know I have to face those who traumatized me with a “happy” face I become overwhelmed with anxiety and sometimes downright fear.

This year, I am going to try new strategies.

I have better coping mechanisms – I know some of my “main” triggers. I know how to handle my anxiety in ways that are more positive. I have learned not to take other people’s “issues” or “insecurities” personal. I will have an emotional reaction and may be hurt, but I can see it for what it is and it has nothing to do with me. I will not feel bad or guilty if I am unable to stay the whole time at family events – my kids come first and if they are overwhelmed or the environment is too much for them we will not stay or even go.

If I am feeling overwhelmed or overly anxious I will not go.

AND I will not feel bad about myself for making that decision. I am also, looking into a SAD (seasonal affective disorder) lamp or lighting, or some other possibilities to get me through this winter. I think being mindful and aware of how the seasons affect me will make a huge difference this year. In the past, I felt helpless and unable to have any control over these things. I felt like I was in a constant state of “unexpected attack!” Now I feel that I have a better understanding of myself. I also, feel that I have legitimate reasons as to why I go through this each year.

I had spent many years, feeling like a failure and as though I “should” be able to stop these emotions.

I felt that I “should” not feel confused, awkward, or sad being around family. I felt like something was wrong with me because I did not enjoy the holidays as others seemed to. However, the truth is that I do feel that way and there is nothing wrong with that. I have mixed feelings of enjoying parts of it and despising other parts of it, but this year I am determined to have a better attitude of acceptance for myself and doing what I need to do in order to keep a healthy mental and physical balance. The holidays, egads! :-)

Here are a few related reads!

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“Daniel, You Are An Awesome Cat!”

This may be a little ranty I am not sure, but I need to process some things. Yesterday, while Ariel and Joshua were doing gymnastics Daniel and I came in for the last 15 minutes to watch them. This takes a lot for Daniel because he is in a gym with big huge mats, uneven bars, a bouncy trampoline, and large foamy blocks to jump and pounce upon. He wants so much to go running onto them or make echo sounds off the mats with his hands. He does not want to do gymnastics he just wants to play with the equipment. I try to entertain him and watch Ariel and Joshua at the same time.

It does not always work. :-)

He finds ways to entertain himself by finding spiders, running his fingers along the lines on the floor, clapping, and/or asking me questions. Yesterday, he was making me laugh because he was being so hilarious AND having fun. Backtrack a little, much like me Daniel has certain loops that come and go. They are areas of interest that can consume many of our thoughts and time. Daniel’s current love interest is one that he has had since he was a baby, Winnie the Pooh and all of the characters with that silly ole’ bear. Tigger and Heffalump are his two favorites at this time. He REALLY wants to have a tail like Tigger and wants to do the whoopty-doopty pounce. About two weeks ago, he created a ginormous tail out of strands of string and shoelaces that he collected from around the house.

The final tail length was about twenty feet.

He clicked two Lego pieces together with the string in between them so he could place the Lego into his pocket or the elastic in the back of his pants. It was quite amusing to see him walk around with his gigantic tail. However, it started to be tangled, wrapped around furniture, we were tripping over it, and the cat was chasing it. I went in search of a tail that would be better for everyone. I found a perfect clip-on tail from a cat costume at Target. (Best $5.00 spent) He has not taken it off since I gave it to him. I let him wear it wherever he wants. I do not care if he wants to wear a tail. I think it is awesome! (I would walk around with a tail too, but I know that I would end up losing it.) :-)

He cannot wait until Halloween so he can dress up like Tigger and wear a tail like Tigger.

While Daniel is walking around the house and we are out in public, he joyfully adorns a fabulous tail. He is all smiles and giggles – he talks and plays the way that he wants to play. Yesterday, at the Y playground he went up to a boy who was playing in the fire truck, sat down next to him, and started to play the same way the boy was with the steering wheel and making sounds. Daniel has never done this before, he looked at the boy smiling, and engaging though, he did not say a word. The boy looked at him for a moment, but went along with Daniel and they both pretended to drive while smiling at each other with the only communication being sounds and smiles.

After a few minutes, Daniel jumped out and ran off with his tail flapping and his hands clapping full of glee.

The boy did not mind that Daniel had a tail. He did not mind that Daniel did not talk to him either. He even looked sad when his dad told him it was time to leave. (Heads up I am leaping back to Friday for a moment, this is one train of thought for me I hope it translates ok with you.) On Friday, Daniel wore his tail to Ariel’s co-op school. I honestly, did not think anything of it. A tail is “normal” in this house. As a matter-of-fact, Daniel has wanted a tail for a long time and one of the first things he ever communicated was that he wanted a tail.

One of his first questions was, “Why can’t I have a tail?”

So once again, he was happily wearing his tail and not too many people took notice. Some made comments about Halloween, but he informed them that his tail was from a “cat costume and I am going to be Tigger for Halloween with a real Tigger tail.” The day was beautiful and I took the boys outside. (I promise I will get to the point of the title in my post in a minute – my brain in processing mode.) We spent almost the whole time outside because Daniel requested that we leave the social room, but would not tell me why. I was hoping that we could sit in there because the ASD mom and her boy were in there. I wanted to try to talk to her or let Daniel be around the boy for a little bit.

Daniel did not want to stay so I gathered Joshua and off we went.

After Ariel’s second class, we went back outside and the ASD mom was outside with her kids. We were coming from our car because I gave the boys a snack and Daniel stopped in his tracks. He started playing with a post and refused to move any closer. I asked him what was the matter and he said, “I don’t know”, but he looked over to where they were sitting. I asked him if he wanted to go see the boy and he said, “No. Why do we have to be here?” He would not look in that direction, but his body language and behaviors were very different than, the happy tail flopping boy I had just moments before. I asked him, “Does that mommy make you uncomfortable?” because he seemed to look in her direction and when he saw her in the social room he no longer went to that side of the room. I was trying to piece things together.

He said, “Yes.”

I tried to ask more questions without probing too much, but he did not want to talk about it. There was plenty of space for us to frolic and pounce about so I played chase with the boys, we walked on beams, ran back and forth counting rectangles and squares on the buildings, we explored the trees, rubbed their trunks, looked at bugs, and had a jolly time. The whole time I could feel the mom’s eyes on me. I felt a sense of judgment, but I wanted to be wrong. I shook it off because I am THAT kind of mom who plays and acts like a kid herself and I am ok with that. After their lunch was done, her kids came over to me. The youngest is around three years old and he asked me “chase?” I played with him and her daughter for a little while with my boys.

I watched her ASD son observing the whole thing.

He watches Daniel and me whenever we are around. The little guy does not smile much. I sat down next to the woman to rest while our kids ran around. She did start a conversation and I shared that Joshua was starting his rounds of evaluations next week. She looked at my boys, Daniel was running, and flapping, Joshua was rolling down the hill getting covered in grass and then, leaping and falling. She made a comment about the tail and I shared all about our tail adventures. I am not sure how to explain the feeling of our conversation other than; something did not feel “good.” There were no words that seemed off, but the feeling was off. Daniel would not come near us while she was there.

After they went back inside, he came right up to me.

I think Daniel was getting a “negative vibe” from her. He will not go near a person if he “feels” anything that makes him feel uncomfortable. I left there feeling at peace with my parenting style and with the happiness that my children have being themselves, despite having the foreboding feeling that somehow I was doing something wrong. Hopefully, it was just an “off” day we will try again next week. I had all of that stuff brewing in the back of mind when another parent gave me the “stink” eye. Back to Saturday at the Y, Ariel and Joshua were doing their awesome gymnastics moves and Daniel was going back and forth on the gym floor acting like our cat with amazing precision. I was laughing and enjoying my child.

He was laughing too.

The more that I found him amusing the more detail he added to his character of Nathaniel our cat. I saw the people looking at him. I saw the people the feeling uncomfortable, but he was not harming anyone and he was not in anyone’s space. When one of the men gave Daniel a dirty look, then, looked at me I shrugged my shoulder at him as if to brush him off, and I said, “Daniel, you are an awesome cat!” He grinned from ear to ear and giggled while, crawling back to me. I was rushed with all sorts of thoughts. My head filled with images, questions, and social confusion. Thoughts wondering why so many adults demand that children behave a certain way. Why must we take the childness out of being a child?

I thought about me and how I still do things like that.

I may not act like a cat, (out in public lol!) but I most certainly get on the jungle gym with my kids. I run around being silly and loud. I sing in the store and dance with carts. I have not lost my inner child and she still does cartwheels, whoops, and hoots all around. When she feels like it – I am silly, but I am intensely serious too. I know that many people have an expectation of a boy Daniel’s size. He is a big 8 year-old he is very tall and looks older. I understand that, but even still let him be a kid. Why must he be judged and why must I be judged for letting him be himself?

There was so much for me to process the last two days that I needed to write this stuff out.

It all really bothered me on many levels. All of these things as well as thinking how society seems to want to strip the freedom and creativity of being a child then, morphing them into some sort of cookie cutter “ideal” that is impossible and ridiculous to achieve. I thought to myself, I should go up to that guy and say, “Hey, my kid and I are the new “NORMAL” deal with it!” It was a funny thought, but it would not change anything and technically we are not the new normal. There is no normal we are all unique individuals. Perspectives on raising children are so vast. Perspectives on what is defined as being a boy and a girl are so contorted. Perspectives on being an adult are vast as well.

I can only do what I feel is right for my kids and if Daniel wants to be a cat bi-golly I will let him and be proud of his feliness! 

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Insight From Daniel’s Dream

The talk of the house has been about reading. A personal goal that Daniel chose himself for this year was to work on language arts. He chose that for his “About Me” project that he did for his virtual social group. He did not talk much about it other than say, “I want to get better with my language arts.” I know better than, to push him for answers or reasons why – many times he is not sure how to explain it to me. He just “wants” to do things or try things. Reading aloud is an incredible challenge for him.

He and Joshua both struggle in this area.

I have had frustrations with the school doing DIBELS assessments with them because I do not feel that they are accurate at all for my kids. Even with Ariel, she reads silently at amazing speed, just last night she read three of “The Diary of a Wimpy Kid” books in an hour and half. She does score high with her reading aloud (fluency) though. I have read several things recently that have stirred my initial gut feelings about Daniel and how much he can read, understand, and comprehend. I have known all along that, he understood much more than what he could communicate and the more verbal he is getting the more I am discovering. I am not sure if Daniel will ever be comfortable using the spoken language as his main source of communication.

Mine is not, mine is in written form.

The things that I write out on here would never come out of my mouth fluently. I would get stumped, lost, hands moving, sweat beading, anxiety flaring, desperately trying to grab hold of the words that are flying through my head so articulately, but getting to my mouth as dismantled jigsaw pieces and blurting nonsense most of the time. I watch Daniel try so hard to get the words out of his mouth – I see his struggle.  I continue to reassure him that it is ok to take his time, to stop and gather his thoughts, and let him know that he does not HAVE to hurry to get the words out.

I spoke to his special ed teacher today and she agrees with me about the DIBELS assessments.

She and Daniel’s other teacher are on board to help him and to make accommodations needed to make him feel comfortable and feel successful with his lessons. One thing she mentioned was getting him a word processor to help with his testing’s. I think this is wonderful, but Daniel is not quite tackling the keyboarding with ease. It depends on the day. Some days he can type much better than other days. Some days I have to type for him otherwise, it will take all day to get an assignment complete. This causes him much frustration and I will not force him. He has ideas, thoughts, answers, but his fingers cannot move as fast as they come.

I had my concerns about whether Daniel knew as much as it seemed.

I did not doubt his competence; I was concerned as to whether he understood his grade level material. (I have never doubted Daniel’s intelligence or ability to understand/comprehend you can read my reaction to when he was first evaluated through the school here.) I thought he did understand his grade level material, but I have no true way of gauging it. The tests that he took at the beginning of the year were stressful for him and me. They took a looooong time and he was so frazzled by the end of them.

I watched him read and answer questions quickly and wondered if he was only guessing.

I waited for the results to see what happened. Both his reading/language arts and math came back “above average.” Again, I thought so, but I was still a little hesitant so I had him take another assessment through an online tutoring site that I am using to help him with reading, he scored “above average” again with his vocabulary being at “low level 4th grade.” My gut feeling has been that Daniel is very intelligent I just have not found the “it” thing to help him. I used to think that there was an “it” thing, but there is not. There are multiple “it’s” that will change, morph, progress, fall away, enhance, and transition into all sorts of things that work together to help his learning.

This morning I received a HUGE chunk of helpful insight from Daniel himself.

Daniel loves dreams, he loves to dream, and when he does dream a good dream he is very excited about it. The kids and I all have some intense, lively, and colorful dreams. Ariel shared hers, which ended with the animals outside throwing me up in the air to the moon, and I discovered that a cow actually lived on the moon and the moon had arms. Yes, that sounds about right! :-D Daniel chimed in and said, “Mom, I had a dream. I had a dream that I read pictures and I was reading like you mommy.” I asked him a few questions about his dream and discovered that Daniel does see words to pictures.

He described it in a similar way to how Temple Grandin explains that she sees in pictures.

However, I understood more of how Daniel sees words. He sees them like me! I had not thought about it before because I have learned to cope and navigate through my world to survive – I did not give this much thought. If I find myself too close to something, I tend to have “blind spots” in my ability to see certain things. When I see words they are attached to images, I now have a ton of different images in the database of my mind, but that has taken a lot of time. When I see the images, I also see the words spelled out. For instance, when I look at a tree I see the tree in its natural setting as a realistic tree, but the letters flow and kind of dance t-r-e-e around in my mind.

They are separated, but whole and connected to the image.

I see an image pop into my brain when I hear a word – I do not hear the word. I see the word coming together along with the image. David shared with me that when he hears a word he hears the sounds (phonics) that the word makes with the letters and an image comes later. I have no sounds to letters unless they are connected to some other sensory experience for me. The more I spoke with Daniel the clearer it was to me how he processes reading words AND how I do. Now I have some ideas on how to help him a little more with reading to make it less frustrating. I feel that this also confirms why using Pecs images did not work for Daniel. The images made no sense to him.

These types of images confused him very much. 

I used the idea of the Pecs images, but printed out our everyday items that he used in our house. I used realistic images of day and night, pictures of our toilet, our bathtub, his food that he actually ate and his clothes, etc… The cartoon illustrations confused him and did not work. He would become frustrated, upset or walk away from me. When I started using “real” items labeling them with words he started to communicate with hand motions, pulling me to the items that he wanted, or attempting to say the words. I now can use his dream insight to help me use a similar method with the stories or the words that he is learning.

It may help him read aloud better it may not, but I think that it can help him.

Interestingly, Daniel can look at a word on a page and struggle with it, but if I spell it aloud, he can connect the word and say it almost immediately. I still struggle with reading aloud, so I am not sure if Daniel will ever become fluent in reading out loud. I really do not care it is not a skill that is going to make his life better or contribute to his ultimate well-being. However, reading will and if I can help him find joy in reading in some way then, I think that will make his life a bit easier and it opens up another world for him that he has not discovered. Reading has been my world away from this world. It has been my comfort and solace when I could find no other.

I had challenges with reading, my words move, dance, have colors, and images.

While growing up I found it difficult, but one thing I did do was spend hours reading, I would read aloud to my stuff animals to try to help my anxiety for reading during class. I would read along with record books for hours and hours nonstop. These are the things that I did on my own to help myself. Daniel does not like these types of methods nor does he enjoy books in the same way that I did (do). I am going to brainstorm on this and do some research, but for now I am excited about several things here. Daniel is communicating his thoughts and SHARED in detail about his dream. He has expressed things that he want to work on.

Daniel has been sharing his thoughts and feelings in ways that he has not before and I find that exciting! 

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Complexity Of Language (For Me) II

A bit of digression, I had not allowed myself to deviate from the definitions of “love” until recently. However, I have a multiplex of thoughts when it comes to the word love or expression of love. This applies to many words, but I am using the word love since it is such a complicated word for me. Though the words that I shared in my last post were what I felt when I thought of love, or heard the word love. Sometimes my ability to love is so simplistic that it is like watching a little child love without hindrance then, other times my caution keeps my love halted and hidden in a vortex of darkness.

I love deeply, intensely, but also very simply – still I find it all very complicated. 

When I think of loving another it can come rather easily in my way of expressing love, when I think of someone loving me it is a challenge for me to comprehend. The dictionary definitions did not reflect my thoughts, images, or emotions attached to the word love – I found (still do) find this confusing because the way that others spoke (speak) about love was not the same feeling or emotions that I had so obviously something was off.(?) I automatically assumed it was I since I had been off so many times. Many words for me, have great attachments to them that range from a scent or image to a traumatic event.

It can trigger a place and time when I first heard the word. 

Love for me was (is) riddled with an opposite feeling of its dictionary definitions, throughout my life I have had consistent relationships where people said they loved me, but abused me, treated me as though I had little value, or were in some way inconsistent. I could share several different scenarios, but that would take too long. I have taken some words back, created my own definitions that align with how I interpret them such as forgiveness, friendship, and empathy. I had given up on the actual definitions of some words because so many seemed to believe that it meant something else. I understand that my definitions and perceptions are going to be different the majority of the time.

I can be (too) serious about words and language many people are not.

Once I understood that and accepted that it became easier for me to be more accepting of their “rounding” of words. The reason I share reading the bible is that it made me feel connected to my fellow man for the first time and the possibility of a personal god that never made sense to me before. The people in scripture wrote openly about their pain and about the realities of how hard relationships were and how confusing God was to them. One of my favorite books would have to be Job. When I discovered the Catholic versions, the lost gospels, and then original Hebrew, the Greek, and, and … and other religious texts my mind swarmed with all sorts of questions.  I dissected words from passages; I looked them up read the etymology and applied that to my understanding of how to live out the gospels.

I spent hours, days, years, studying these things only to discover that others did not do this.

When I went in-depth into researching and studying trying to remove our current cultural paradigm from my thoughts, the words made more sense to me and I could connect “whole” concepts to my everyday life, but I became more confused by what was being taught in my religious circles. I read it as a whole and it made sense, when I started to break it down I lost this sense of connection and understanding because I became confused at the conflicting interpretations, definitions, along with people’s actions.

I could no longer grasp any sort of language connection to anyone.

I break things down to make many connections, but when the many connections get jumbled by conflicting definitions, ideals, or interpretations I lose my whole and begin to cling to small details because I can no longer grasp the whole. The small details are like Lego’s connecting to make one giant Lego structure – I’ve been playing with Lego’s today. :-) Does this make sense?? I hope so. I knew this all too well – it was exactly why I came to religion in the first place. I thought that it would be different.

I thought that we ALL followed the same rules. 

I learned their language, I adopted their jargon, but discovered that they were not using their own language correctly. The more that I discovered that others did not dig so deeply, into what we were being taught I started to doubt myself and question. Because sometimes it gets too tiring challenging the Many on your own. I started to cling to their words and accept once again that I was wrong. My world had been this way from the beginning and a new place that I thought could help me and give me answers operated in the same way.

People did not say what they meant nor do what they said. 

It was confirmed once again that I was an alien living in Bizzaro world. BUT this was and is the big misconception, it gives the indication that somehow, I am wrong and they are right. My form of communication and expression is not wrong and neither is the way others communicate as long as it is not abusive or manipulative in anyway. There has to be openness to learning each person’s language if there is going be any sort of effective communication. They did not want to hear what I had to share; if they did it was for some other gain.

The only conclusion I could come to was that there must be something seriously wrong with me.

Right is wrong, black is white, truth is false, hate is love, etc … I was severely disillusioned and became angry from my hurt. I was angry because no matter how hard I tried to understand I could not. I was angry because I went into an environment that was supposed to be loving, accepting, caring, nourishing, and it was the same thing as I had encountered before – only in some cases much worse because the manipulation and control was damaging to my self-esteem and my identity.

After, I dismantled the religious jargon I had devoured for over 10 years I finally saw the difference.

This has taken several years, and with my recent research interest on narcissists and sociopaths, I have gotten more clarity when it comes to speaking with people in general. I am not saying that people who are religious are narcissists or sociopaths though I have discovered that the religious environment is a good place for people like that to thrive, but so are many places that follow a charismatic leader without question. For me my experience has helped me to gain an understanding that I did not get until I made the connection this past week. (All of this has been swarming around in my head for decades and I have been collecting data for years, collecting, pondering, researching, and connecting.)

For me words are so complex and simplistic at the same time.

They are my source of structure, stability, and understanding to language. They are also, confusing. They are wrapped with their different definitions, my personal experiences, my sensory connections, my emotional connections, my picture images, and then, my response and other people’s responses to words. They are also, filled and fueled with every other person’s personal experiences, sensory connections, emotional connections, images, and others response to their words – even if they do not realize it. Words are alive! I cannot write down the word “love” and think pleasant happy thoughts. That word represents a multiplex (I like that word.) of definitions, ideas, emotions, colors, numbers, people, pictures, songs, poems, and thoughts of inconsistency, hate, and evil. I find it difficult to hear the words “I love you.”

I have no problems hearing it from my kids – it is not complicated with them.

I know what they mean; they have not put any stipulations upon their love for me. They will not stop loving me because I have a bad day, they will not leave me because I forgot to get them yogurt, and they will not threaten to leave if I do not fulfill all of their expectations of how I should be as a person. They accept me as their mom and they accept me as I am with my good days and bad days. Other people do not, I have had a lifetime of people telling me that they love me, but if I am not the way they want me to be they leave. If I know that I cannot fulfill their expectations I end up leaving. That is the excerpt of my thoughts about the topic.

I am fine with my friends on the internet who say, “Love you” or share those types of words – they have proven to accept me.

Many words that I have associations with cause me to become confused or emotional. When I have expressed myself and another person has shared with me that they too feel that way, I have thought that we meant exactly the same thing. I have discovered that this is not true. We can have a “general” agreement, but the words do not mean the same thing because they are filtered through our own experiences, definitions, ideals, interpretations, expressions, wants, needs, and unique perspective. We can relate to one another and have similar thoughts, but we cannot have the exact same comprehension of the words being shared.

This has been a very hard thing for me to understand.

I thought that everyone understood words the way that I did. I thought that when I shared similar experiences that we were speaking the same language. We cannot be my language is my own and yours is your own. We may have an affinity of knowing and relating to each other. However, the way that you express and use words to describe is going to be different. How you interpret, my expression will be unique and exclusive and vice versa.

I did not understand this before.

I thought that any similarities meant “the same” as me. I also, thought any differences meant that I could no longer “understand” the person.  We can communicate with simpatico, but ultimately I am still living in my complex, confused, connecting world hidden in my brain covered secretively behind my eyes. You are living in your own hidden world full of perplexing and fascinating thoughts hidden in your brain, covered secretively behind your eyes.

I will not be able to look at a word like flower and think of a simple peaceful flower.

My mind will burst into thoughts of a seed growing into a flower – spiraling into where did the word flower come from – why do we call it a flower – morphing into the color of the flower  - what that color means – who do I know likes that color – who do I know that likes flowers – why do flowers make them happy – what trauma or happiness do I have associated with flowers – pictures of flowers – smells of flowers – music about flowers – poems about flowers – books that talked about flowers – people in my life who have smiled or cried because of flowers … That is only with the word flower and though I like flowers (not to receive them in the garden or in nature.) they really do not hold much interest to me.

Imagine what I do with other words that carrying great significance.

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Deep Wounds ~ Feelings Of Constant Rejection I

This is a processing post. There are so many factors and life history that play into this that I am not covering all of my thoughts. I am sure it is going to spawn off into multiple posts. My mind has been racing, thinking, and connecting. I cannot get it all in one sitting besides I think I have to break this one up into two posts… I did. On facebook the other day, a friend of mine posted a paragraph of self-affirmations. The way she worded it was as though it was how all people talk to themselves, I had a moment with no filters and said something like, “Wow, I never talk to myself like that.” I added something about soaking in those words because I do not do that.

Part of it is my personality, I am not the type to tell myself great things about myself.

I understand that others do and it is good for them – it does not help me in anyway. It makes me feel awkward and I really do not think about those things. Even though I have my challenges with negative thinking I do not think negatively of myself truly. I do know that I accomplish a lot, I am proud of all that I have done and I have no doubt that I will accomplish  what I want to in the future. I do not think about whether I am beautiful or not unless it is brought to my attention in some way – then, I question what I look like not necessarily if I am beautiful.

I do not worry about getting older, I rather like it.

After living the life that I have, I feel like life has just begun. My healing journey has given me the opportunity to relive again. When I look back to my past, I have pain when I look to my future I have hope. The only time I start to feel insecure or think that I should look, act, or be something else is when my social confusion kicks in. If I see many images of a person looking a certain way and people rushing over to like them I will wonder – this has been throughout my life.

I watched the popular people and wondered what made them popular.

I wondered if I were to get the same clothes, shoes, hair style, personality would I be accepted then too? If I listened to certain types of music, watched certain shows, wrote certain types of things then, would I be accepted – acknowledged? The answer is no. It has never worked for me. In my awkwardness of trying to become something unnatural to me I would eventually, grow tired and others dwindled away.

It wasn’t that I wanted to be popular -

It was that I thought that was the right way and my way must be the wrong way because those people had swarms of friends and I had virtually none. I have to fight off the confusion of wondering, Oh, is that the right way? Is this why people ignore me? Am I supposed to be doing that if I want people in my life? Should I be talking about that instead of this? All sorts, of questions arise and lead me into a spiral of panic and fears that somehowsomeway, I am doing something wrong that everyone else knows, but is not telling me.

I am the one that no one notices has left the room, the group, the family.

Ordinarily, I go about my day without a thought of whether I am good enough, I know I am so I do not think about it … until, I am reminded that NO I am not – to some. On days, when I am feeling good and productive I do not give it a thought. I do not spend time thinking about my outward appearance or how I feel on the inside because most days I just am. I feel good if I accomplish things, I feel bad if I do not. When I do not feel productive or as if what I do has no purpose that is when I start to feel down and the negative thoughts come.

However, these negative thoughts did not come from me.

I was not born into this world filled with doubts, fears, insecurities, and the sensation of not being loved. Nope, that has been a long time in the making. Many people contributed to this. Many situations caused me to become so enamored with thoughts that who I am was not good enough, that what I do does not matter, that no matter how hard I try I am still invisible! It is kind of a catch-22 because many times I want to be invisible. I work hard at staying out of the limelight because so many of my family members fit and rage for it.

I do not need that attention, but it does hurt when I am ignored.

The other day Inner Aspie shared this Feeling Unlovable article. I knew that I could not read it on that day so I waited for this morning. It opened up some deep wounds in me that I did not want to accept. The reality is that I feel unlovable. I read this part and immediately had the thoughts of last night racing through my head. I will share those in a moment. Here is what I read.

“This phenomenon is called “rejection” in the therapy trade, but a more appropriate label from the child’s standpoint would be “annihilation.”  The child feels that her validity as a person in her own right has been shattered; she may as well cease to exist.  Since she doesn’t really know how to stop contributing to her own despair, the whole problem is insolvable.  These “feelings” become the attitudes that Julia carries with her into adulthood, and these mistaken attitudes predispose her to behave in ways that are not appropriate to the reality situation.”

Last night, I could not sleep.

It was past midnight and David came in and asked why I was still up. I did not know, I was frustrated because I had to get up early for the kids classes. All I knew was that my heart and mind were racing, I could feel the panic rising in my chest and I was working so hard at keeping myself calm. I was fixating on one word, “embarrass.” Someone had commented on my poetry blog that they would like to give some constructive criticism to one of my poems with my permission and they asked if I would prefer it in a private message as to not embarrass me.

Logically, I found this a positive thing.

I think the poet is very good and if they are willing to take the time to help me improve my writing that is awesome! However, I was already in a wounded state because this weekend was my youngest sisters baby shower and I chose not to go because I knew that I would have all sorts of triggers, trauma, fears, and anxieties being around her and my other sister. We basically have non-existent relationships. I have many wounds in regards to that. It sucks. They do not get me at all and I do not get them.

I would probably not even be concerned about it – we are very different and have very different interests.

However, I am told by my father and my step mom that I am part of that family, but I do not feel like it and that causes me to think about it and try to understand things that my mind cannot understand. I cannot shake those feelings. My sisters do not acknowledge me in real life or even on facebook. They have made it evident that my life is of no concern to them. They do not acknowledge my kids birthdays, anything that I share basically. If there is a photo of my other sister, aunt, and me they will ignore it, but if it is my sister and aunt they “like” it. These types of things feel childish and I hate the fact that I am even affected by it.

On a regular, it does not bother me.

I have too much going on in my life to worry about that stuff. What gets me so upset though, is that my sister not acknowledging my message to her about not coming can derail ALL of my accomplishments and make me feel as though I have not done anything with my life or that ALL that I have done and do has little value. This from people who do not even think about me? They have never commented about the books I published, my blogs, what I do with my kids, autism has never even crossed their lips to me. As far as I am concerned, based on their actions and lack of acknowledging my existence I have no value to them.

Why does that bother me?

Why am I concerned about people who do not even think of me? I can only attribute it to my constant feelings of being rejected by my father and my mother, and the rest of the people who have influenced my life. There are things that I cannot shake. The true root of this particular issue has to do with my dad. My sisters represent my feelings of being in favor and falling out of favor with my dad throughout my life. They have a dad that I never had, they have relationship that I will never have, they ignore me the way that I felt my dad has ignored me.

I have similar feelings with my mom and my other sisters.

Part two continued tomorrow …

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That Did NOT Go As Planned …

I have concluded that something, for some reason, is trying to teach me a lesson in things not going my way. Granted I have managed to progress in this area fairly well, most days. After having children you really, do not have a choice other than learned to accept this fact of nature. HOWEVER, things have not been going as planned for over a week if not longer – I can no longer remember because my allergies have messed up any sense of time that I had which was already very little to begin with.

There has been problem after problem with the house that we are renting.

This has caused people to be in and out of our home and property for days. This is never good. It makes me incredibly anxious and left with feeling constantly “invaded.” I have to put in extra effort to work through my anxieties because the children, especially Daniel feed off my emotions. I have not been “perfect mom” throughout all of this. I am also feeling frustrated because I have not completed several things I set out to before Ariel starts her gymnastics camp next week. The week after Joshua starts his basketball camp and that will be two weeks of us being at the Y for three hours every day. Not to mention my two workout nights. A lot of people time …

We will all need to recover from that.

I have so many posts that I have been trying to write that I just cannot complete. I want to finish them so I will stop looping about them. My mind is not cooperating and I find it very frustrating. However, today I was hopeful with the plans that I had made. Last Saturday, while swimming at the Y with the kids, I noticed a woman who looked familiar. My brain was scanning her features kind of like the Terminator does, well actually that is quite an accurate way to describe how I process information around me, especially faces. Here take a look Terminator view.

Anyway, I was scanning her features and then, her children.

Her little boy started talking to Daniel, but he just smiled and giggled because he does not know how to have a conversation with other kids yet. Joshua swam over and started talking and playing with the boy. Soon Ariel ventured over as well. I thought to myself that possibly this was a relative of mine because I vaguely remembered pictures of the children. I have such a hard time remembering faces, more like remembering whom the faces belong to. I can remember features, but have no recollection of who they are or why I know them. Once she turned around, I knew her tattoo. I saw that and her facial features started to rekindle my memory. I had a feeling that we were cousins, but I was unsure.

Without thinking about it, I went up to her and asked, “Are we related?”

She said, “I am not sure, what is your name?” I told her my name and sure enough, we are second cousins. She was unaware that I moved back so she was not sure it was me either. We only saw each other throughout the years at the big family reunion we would have during the summers, but it had been over 10 years since the last one and we barely spoke.  As we talked, I discovered that she belonged to a home school group that I connected with, but have not been able to attend any of the social gatherings. This is partly due to my social anxiety, but mostly due to school schedule and the kids not being up for socializing. I normally, do pretty well overcoming my social anxieties for my kids, but when my world feels too chaotic for me I struggle.

I told her that I would friend her when we left and I did. :-)

She added me to their group and this week they had planned to meet at a park that is across a bridge in the next state. It is not that far and I used to be familiar with the town. I decided that I would take the kids. It was today. Everything was going well, I printed out my map and maps for the kids. I packed everyone’s lunches and snacks, and had plenty of water. I worked through some of my social anxiety about meeting new people and my nervousness about how people would respond to Autism. (After I posted about it on my facebook page and my lovely friends helped ease my anxieties!)  We were running a little late, but not too bad. I had prepared the kids by letting them know that we were going to a new place.

I gave them the time frame of how long it would take.

Funny side note here, Daniel saw the map and said, “Oh, my gosh! The park is in another state!” I looked at him and asked, “How do you know that?” He said, “I know because we are going to cross the river.”  I had no idea that he knew that, but I really should not be surprised he has been studying maps lately and this week he started drawing maps of the routes he takes in the house. They are complete with “A” marking the starting point and “B” marking the destination. If anyone comes over, he will be happy to give you a map to help guide you from the kitchen to the bathroom down the hall. Ha ha ha

OK! We left.

I followed the directions, I did everything right, but somehow I missed the exit. I was right there AND somehow I missed the exit ##B! I still have no idea how it happened. The state that we were in has land and land for miles. I decided that I needed to get off on an exit and turn around. Not as easy as it sounds, the exit I got off on spun me into a circle that had me going in another direction. The next exit was seven miles away. I thought surely it would let me turn around and get me back to where I needed to be.

I go off on the exit and it looked like nothing, but land and farms.

Thankfully, I finally got to a place where I could turn back onto the interstate in the correct direction. I will add another component. Daniel was freaking out! I tried to use my Google maps on my phone and it would not work. I tried using the app and the internet I could not get it to work. Daniel was yelling and telling me to use the phone. I tried to explain to him repeatedly that it was not working and he could not comprehend it. Prior to this, he was as happy as could be. I was elated because he actually got into the car knowing that it would take 22 minutes to get there. He has refused to go anywhere farther than, 15 minutes due to his car anxiety. He still will not eat or drink in the car because he is afraid that he will puke.

I called David like 20 times and he was not answering the phone.

I lost my cool after Daniel yelled at me again and caused Joshua to lose it. I finally made it to the town that I was supposed to be in and went to a gas station to try to get some sort of direction thing to work, or get a hold of David. It did not work – David finally answered the phone. To make this shorter, I was right down the street from the park. It was on the river. We got there, got out and I looked for my cousin. I did not see her. I had also, not noticed that in the post she mentioned that there was a splash park. :-/ I took the kids walking by the river because I did not see a park. Eventually, we found it not far at all. They played for a while and then, I let them play in the splash park in their clothes. We ended up having a grand time, though it got a little icky when the train passed by and blasted its horn. Daniel ended up becoming frightened and then, wanted to know why it had to use a horn.

On the way home, I was a frazzled and needed a break. 

I became frustrated because of the whole situation trying to get there; getting lost makes me so upset. I recovered, we all recovered, had a great time and then the blasted train had to go and cause problems! I wanted to leave on a good note. The ride home was good though. We got home I gave them showers fed them snacks and we are all happy and jolly. Today DID NOT go as planned, but overall I am happy. The kids are happy. We have a great new place to go hang out now during the summer. And I found a bridge that I am slightly obsessed with. I love walking by the river that always makes me feel peace and fills me with positive childhood memories. I am going to try to take the kids to another social gathering with the home school group.

I am glad I did not become too anxious and decide never to try again, at least for the moment. ;-) 

Photos from today!

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MindRetrofit Celebrates: 1000 Ausome Things #AutismPositivity2013

Woot! It’s here! 1000 Ausome Things #AutismPositivity2013! A great day of celebration and basking in the awesomeness of Autism. :-)

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Last year I contributed to the flash blog  To “I Wish I Didn’t Have Asperger’s” #AutismPositivity2012 Flash Blog.

I remember feeling struck with heartbreak when I discovered that someone had put those words into a search engine. In my post, I shared some of the awesome things about Autism. I was excited to see what would happen this year’s flash blog. I was delighted to see that this year we were focusing on “1000 Ausome Things!” (Yes, I am using too many exclamation marks in this post because I am over-the-top excited, especially after reading so many of the positives that are rushing the internet.

However, my mind is in a spin and I am having a difficult time trying to articulate what I want to.

Because I enjoy words so much and one of my gifts is using them on multiple levels I am going to take the “Ausome” word for a moment and share with you what I am in “Awe” of in regards to Autism. I use the word in the terms “of an overwhelming feeling of reverence, admiration.” The first part that I share is about my son who is Autistic. There have been so many moments that Daniel has made me awestruck. He filled my mind with wonderment and excitement by his actions and/or questions. The way that his heart feels and how he sees joy in the most simple of things, such as a screwdriver. Who knew that a screwdriver could be such an entertaining toy! It does everything, from spinning to opening up clock radios. It can be used to write words in putty and for some great magnet experiments.

Daniel asks questions that stump me and I love that. 

Only yesterday, without any indication that he has been thinking of this he looked at me and asked, “How can God hear us and we hear him if he is not here?” Good question. I did not want to get into a theological discussion with my eight year-old because he can dismantle my logic in seconds. However, I had to try. I could tell that he really needed some sort of resolution to the question. In my feeble attempt, I told him that God is like a spirit that lives within our hearts and that many times God does not speak to us directly, but through people, situations, or actions. He sat there staring, processing for several minutes. Then asked, “How can God fit into our hearts?”

Good point. 

I tried my best to explain that he does not live in our heart like a little person, but that he is like air, in nature, in every part of being. That led to him asking, “Do we breathe God?” I had no good words other than, “I guess that would be a way to think of it.” I was in no mind frame to have the discussion. :-)  However, it made me think of all the times that Daniel has asked such questions. How do things work? Why do they work like that? Can we take it apart? Can we look at it on the internet? He wants to know every single detail and looks at the small things to connect the big things. His thoughts intrigue and amaze me. His kind spirit and deep emotions move me.

His laughter fills me with joy to the point that even now I have a little bit of tears filling my eyes. 

He sees the world in music; he lives in this world in constant curiosity. (Much like his mother.) He stims in drumbeats and claps. He hums any tune he hears in an instant. He delights and squeals when he gets his favorite food. His enthusiasm is contagious on some days. Yes, those are some grand marvelous (Awe) “Ausome” things that I get to enjoy. I am ever challenged, but the type of parent that I am I think that is Ausome! Those are a few great things about my little boy. This second half, I am not really sure where I am going.

Let us see …

The first thing that comes to mind is that October 2012 I was “officially” diagnosed as an Aspergers adult. I had a lot to process – I still do. I found that finally having answers and a community that I could actually relate to made my soul feel a little more whole. What I have I found is many people who are caring, kind, open, honest, and understanding. These are many of my Autistic peers. They are some of the most talented and articulate people I have encountered. They share their lives openly (as much as you can on the web. :-)) I cherish all that they give and the many ways that they have helped me to understand my mom (an Aspergers adult), my son, and myself.

I have found parents who are just as compassionate and caring as well.

They work hard at being advocates and I am amazed at all their efforts. They shine of positivity. There are some days when I feel a bit down and unsure about many things, but I have been able to bounce back much sooner because of all the “Ausome” words that our community pours into the internet waves. I have a better self-image because of all the positives that my peers and our advocates share. Being able to find answers, relate to other’s stories, and share my own stories knowing that others will understand has boosted my self-esteem. I am able to see positives about myself that I could not see before. The voices that are out there sharing and focusing on the good have helped spring board me in many ways to much soul searching and healing.

To me that is HUGE “Autism Ausomeness!”

I believe that the foundation is being laid for my son. (And for my other two children.) My kids will see their “quirks and oddities” their “stims and unique ways of thinking and processing” as Ausome! They will see a mom who (finally) sees and accepts her own talents and gifts. As well as someone who does not think of being Autistic as a negative, but who embraces it and seeks to help others to see the positives too. I admit it can be a challenge, but that is why we need more people to build us up and focus on our positives. We thrive when people acknowledge, accept, and point out the good things about us.

Ending with a short list.

  1. We see the world in unique and interesting ways.
  2. We have great abilities to seek out and dissect details.
  3. We are artists in whatever talents we have whether through poetry, painting, creating images, or in how we can write and share our ideas about math, science, animals or computers. (Obviously, a very limited list I shared here.)
  4. We can keep our childlikeness that can be a very good for stressful situations.
  5. We have some pretty entertaining (ingenious) thoughts and perspectives.
  6. We can be some of the most loyal and best friends you could ever ask for.

I will stop at six, it is a good number. (And some of us may see numbers dance and leap about in wonderful colors!) 

Oh, and words here are some of my dancing colorful words leaping about through poetry! Happy Ausome Day!

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1000 Ausome Things #AutismPositivity2013 Flashblog Announcement (Reblog)

 1000 Ausome Things #AutismPositivity2013 Flashblog Announcement

We know you have been waiting… and we have been working and organizing behind the scenes. Now we are ready and we are excited to announce the theme for the second annual Autism Positivity Flashblog Postivity Flashblog Event on April 30th, 2013: “1000 Ausome Things #AutismPositivity2013″

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Last year hundreds of bloggers came together in a show of support and solidarity in response to an anonymous person’s Google search “I wish I didn’t have Aspergers”. The posts that came flooding in from all over the world were a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we invite each of you to share one, or two, or more “Ausome” things!

We invite all of you, anyone who is Autistic, anyone who has an Autistic person in their life and all who blog about autism to share a message of support, wisdom, hope, and pride to this year’s flashblog by posting tohttps://docs.google.com/spreadsheet/viewform?formkey=dDdPQjAxV244VjdCcXdYX0pPQ0RBblE6MQ

Please join with us on the last day of Autism Acceptance Month – April 30th, 2013 – in a Flash Blog of Autism Positivity.

To participate:

1. Publish your post on April 30th in the following title format: “ [Your Blog] celebrates 1000 Ausome Things #AutismPositivity2013″

2. Share your post on Twitter, Facebook, and any other social media site using that hashtag (#AutismPositivity2013)

3. Add your link to the Autism Positivity website (submit here or above) and grab the badge from the page tab above.

4. Share/reblog this message to your blog, page, etc.

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Thank you,

The Autism Positivity Project Flashblog Team, 2013

If you have any questions, please contact us at autismpositivity@gmail.com

We can also be found on

Facebook:https://www.facebook.com/ThinkingAboutPerspectivesAutismPositivity

Pinterest: http://pinterest.com/positivityautie/autism-positivity-2012/

Tumblr: http://autismpositivity.tumblr.com/

Twitter: @PositivityAutie

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

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

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

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

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

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

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

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

However, I DO have hope.

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

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

Aspergers – Narcissism: NOT The Same I

Aspergers – Narcissism: NOT The Same II

Aspergers – Narcissism: NOT The Same III

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

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

Is this different from empathy in some way?

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

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

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

I do this too.

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

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

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

Let us take a look here.

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

Simple enough, huh?

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

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

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

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

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

News flash, the general public is hurting.

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

Think about it.

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

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

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

You could end up with silence and them walking away. 

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

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

Positives About My Autistic Son

“I Do Not Understand”

Come On! Enough With The “Lacking Empathy”

“What Is The Cat Feeling?”

My Autistic Son Comforted Me Today

Daniel, Me & Empathy

Things that I read.

How I Experience Empathy 

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

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

A Radical New Autism Theory (Radical??)

How to Test Your Empathy

It’s Hard to Live with Someone Who Lacks Empathy

Empathy 

10 things not to say to someone with Asperger’s

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Autism Awareness/Acceptance Day (Month, Lifetime!)

Hello folks! This year I have found myself feeling the anxiety of the month of April on the first day of March. I do not do well with tension and now that is what Autism Awareness Month represents to me. I already struggle terribly with social situations and relationships. I have had to muddle through all sorts of emotions when it comes to the Autism Community. I have had such penetrating feelings of isolation and belonging that at times I have to walk away to gain my clarity of mind once again. My own journey started with Autism awareness transitioning into acceptance not only for my son, but come to find out for myself!

When Autism came into our vocabulary, it was new. 

I had virtually no knowledge of Autism whatsoever. I had to research, process, dissect, dismantle, research more, and break down an entire mental perspective, process, loop, more looping so on, and so forth. :-) It has taken time, it will continue. I had no idea that my life would become a daily process filled with Autism awareness and acceptance. We are all at different journeys in this process. We all have our unique perspective that is influenced by many factors. I write about my journey and my perspective it is different from my Autistic peers in many ways and it is similar in many ways. I share my perspective as a parent of an Autistic child, some autistic mothers may relate some may not.

10497007-light-bulb-vector-illustrationI have had to and still am in the process of accepting that I am Autistic. 

This is not a bad thing, it has given me such a new outlook on life, and how I see other people and my world. It has answered so many questions that I had about myself. It does not dismiss my challenges or my past that is filled with pains and scars. There are some days that I feel angry because had someone diagnosed me early on my life could have been much different. However, there are no guarantees that it would have been for the better, it could have caused even more struggles. There is no peace in “what could have been’s.” What we do have is the here and now.

And we can do a lot with that.

This year I have realized that I have more empathy toward those who have no knowledge of Autism, or those who are struggling with accepting that it is a part of their life. I relate in new ways to a person realizing that, they are Autistic, through self-diagnosis or receiving their “official” diagnosis.  I see with a different perspective the parents who have just learned that their child is Autistic. I think about how they make their choices to take on the journey of “fighting” it or embracing it. I have come to a place of looking back at my own experience and can apply understanding to others that I could not before.

I am obviously on the side of acceptance, but I will not attack a person who does not agree with me.

I do not have to agree with you to have empathy. I can understand because I have had to go through my own process. In the beginning, it was becoming aware. At times, I become amazed at my own ignorance (may sound harsh) in believing that people know about Autism. I have been baffled when I hear or read people talk about Autism and it feels like the Dark Ages. The reality is many people still do not have an accurate awareness about Autism. There are still many misconceptions, myths, and distorted perceptions.

Media and campaigns are not always the most accurate outlets.

However, they are springboards for getting information out there. In this past year, I have seen many more Autistics writing and sharing their personal journeys. I have read many more blogs from parents who focus on the positives of their child’s (rens) autism. I have read more websites that are focusing on the needs of Autistic children (still we need more focus on needs and helps for children and parents) and slowly there are some for adults. We still have quite a ways to go for Autistic adults; I am struggling with that myself. I need assistance and help in certain areas of my life, but I cannot get it.

The positive is that I am finding resources for my son.

I am thankful for the virtual school because they have made it possible for him to have therapies that my husband’s insurance does not cover, and unfortunately, we make too much to qualify for assistance, but not enough to pay for them out of pocket. Therefore, I keep getting creative and try to find ways to get him what he needs. :-) I see both the positive and the negative and I still hold onto hope. Some days not so much, but today I see the light. (It is not blue. A joke, relax!)

I am not sure if my post is expressing what I had hoped it would. 

However, I want this month to be a positive experience this year. I do not want to get to April next year and feel that tinge in my heart and the stone in my gut. I am going to take this month as I do each month and write what I am dealing with, our family adventures, our challenges and our GREAT days, and most of all continue to share my Autistic perspective. I can only hope that my openness and experiences that I share on my blog will move people to be more open to the possibility that no matter where we are at on the spectrum our challenges and needs are valid and need to move from awareness, acceptance, and to more action.

I do not want to be filled with anxiety this whole month. 

I will not argue, or demand that people share my point of view. I will continue to do what I have done all along, share my Autistic life spreading awareness, hoping for acceptance, longing for action, and support those within my community. There are plenty of people who are sharing some great posts this year. I hope people will wander and meander to read the different perspectives with openness and acceptance all around. I will once again share an older post because I still feel the same, pretty much. Bringing Awareness, I Am Turning Blue (Repost)

Happy Autism Awareness/Acceptance (Every) Day! 

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