05/10/13

Ha ha ha, Wait…

I am coming out of my overwhelmed state and feeling much more positive. I forget what stress does to me and when I cannot see any end or solutions, my mind starts to spiral. Thankfully, my exercise loop is back because it helps me a great deal emotionally, mentally, and physically. Exercise is a lifelong special interest of mine, but if I become bombarded with daily life, I can lose my drive to keep on doing it. I also, know that I can become obsessive about it so I have to keep a steady balance.

BUT it makes me feel so good!

I have started to work out on a daily basis, even if I can only fit in 20 minutes of cardio, but throughout the day, I am doing push-ups, scissors, jumping jacks, crab crawls, whatever it takes to give me that boost to push through the muddledness that tries to take over. This has proven to help me – sometimes for only a short period, but it is enough to get things done. I had not thought about any physical goals with starting my workouts back up, until I started to feel my body get stronger. It has taken several weeks, but I am feeling the difference in my workout.

I am able to do 10 real push-ups!

That is huge for me because my upper body strength has always been a challenge. This past Monday I was able to do things in my spin (cycle) class that I have not been able to before. My body has not felt this strong in years. My new strength strangely makes me feel more confident and self-assured too. Self-assured for me means that I do not think about my “oddness, possible inappropriateness, and/or quirks.” That is until it is brought to my attention. I had not initially meant to talk about my workout stuff.

My original thoughts had to do with last night at my Piloxing class.

The other night I did not get any alone time, last night I needed to work out even though I did not feel like it at all. (Ariel came with me so technically I still have not had any alone time, I am taking some time today and doing whatever I want!) I did not mention this in my last post, but Daniel will not go to bed without me again. He is refusing to leave me and for the past couple weeks Ariel is waking up in the middle of the night and coming to bed with me too.

I have not slept very well being sandwiched between Daniel and Ariel. :-/

I digress. I arrived a little early to class, the instructor and several other women were sitting outside waiting for the other class to finish so we could go in. The instructor is a lovely woman; I really like her bubbly and happy attitude. She is not fake about it and she is not over the top, she feels very genuine. However, last night I was not in the mood. Everyone was quiet except for her and another woman. The instructor realized that their conversation was rather exclusive so she tried to spark up conversations with the rest of us. She asked, “So how is everyone’s week going?” All the women said things like, “Good, fine, everything is going good.”

I could not do it.

I was not smiling, I looked at her trying to get something positive to come out of my mouth, but I could not. Right before I left the house, I was trying to comfort Daniel because of something that triggered him. It does not bode well for me to go into a social setting right after Daniel has had a difficult time. I was in recovery myself. She could tell that I was not too zealous about the week and she asked, “Is your son still having a difficult time?” This sank in my gut triggering the week prior when my aunt had walked by and asked in front of all the women, “How is Daniel? Is he still melting down?’ I knew that she was concerned and was trying to be supportive so I was not offended or upset, but I had panic run through my body and mind because she said it in front of all the women. (If she said it to only me I would not have thought about it at all, that is how we talk to each other.)

All of the women looked at me oddly and I said something like, “Yes, he is still having a rough time.”

They looked at me as if waiting for more details, but I would (could) not say anything else. I found myself holding back the words “He is Autistic.” There were (are) several reasons, 1) I do not want “meltdowns” associated with my son because he is such a sweetheart. He is gentle, kind, and caring much of the time. 2) I normally know the triggers of the how’s and why’s of his meltdowns.

I would end up going to great lengths explaining why he is having these difficulties and people really do not want to hear it.

3) Media has tainted Autism in such negative ways that I never know how people will respond when they hear that my son is Autistic. 4) I sure as heck do not want to encounter someone telling me that it is vaccines, my bad parenting, demons, and/or he can be cured in an instant with coconut oil. Yes, people have said these things to me in real life so I am a bit apprehensive in sharing about my son. (I am not even at a place to consider sharing that I am Autistic.)

It has nothing to do with shame; frankly, I do not have the energy to take on those types of things right now.

5) I want a safe place! I want to go to a place where I can let go of all of the stuff going on in my life and enjoy myself. I have fun working out. The harder it is the better I feel. I start laughing when it gets really tough. It releases some sort of “happy juice” in me when I feel as though my body cannot go any farther. Then, I feel this intense “RAWR!” inside my head and I push forward breaking my own boundaries. I compete with myself and try to push myself harder and harder each time. 6) I do not want people’s sympathies. Those who understand the challenges my son and I go through is enough for me.

When I read from another parent who is or has gone through some of these experiences it gives me hope.

It reminds me that I am not alone. It reminds me that others are struggling too and they got through it. It reminds me that I have gone through it before or it paves the way of understanding when/if it happens in my life. Those who have not been through it cannot comfort me. It does not help me to hear a parent of “normal” children try to find comparisons to make me feel better. They are not the same. I do appreciate their efforts in trying to relate and be sympathetic, but it only enhances my feelings of isolation.

Those are a few reasons why I do not want to share with people.

Back to the story… She felt uncomfortable with my respond and moved on. She then, said, “Be sure to invite your friends here because we need to have eight people each week to keep the class going.”

Everyone was silent and looking down.

She said it another two times and then, looked at me. Without a thought the words blurted out, “I do not have any friends. If I did I would invite them because I love this class.” She looked at me and laughed saying, “Oh come on.” I looked at her matter-of-factly, “I really do not have any friends.” Realizing that my words were causing EVERYONE to feel uncomfortable, but not really understanding why, I said, “I just moved here and have not had opportunities to meet people.”

At this point, my aunt was walking by and I felt that I had to say something.

I blurted out, “She is my friend, but she teaches on Thursdays so she cannot come.” My aunt stopped and said, “What?” I told her what I had said, and she immediately took over. I knew that I had said something that seemed wrong, but I was not sure why it was wrong. I reached out to my aunt because I knew that she could help fix whatever “social faux pas” I had done. I knew that I needed a good reason for not having any friends because of experiences, being in very similar situations. My aunt did take over and gave more clarity about my move and not having time until recently, and that I have not had time to make connections. That is partially true.

I could feel the air in the hallway a little bit heavier, but still not sure why.

The conversation dwindled, I felt awkward and sad, but could not think of what was making me feel that way. I later understood that what I was feeling was the emotions from the other women. They felt sad for me not having any friends. However, it took all night to process that for me to understand that sadness and that it was not my sadness. Then, it was time to start class. There is one woman who has been friendly toward me, I finally realized that I had briefly talked to her the night I went into Zumba instead of spin class. (No bikes were available.)

She has sparked up “Hello’s, how are you doing? and you should try such and such class.” several times.

I did not understand why she acted as if she knew me, but I realized that she was being nice and seems to be similar to the instructor with wanting to talk and be nice. I like her too. I have tried to talk to her more, working on my social anxieties. Last week she suggested that I try the Zumba class on Wednesdays and she commented on how much I seem to enjoy the classes.

It’s true, I seem to be the only one in them laughing, and smiling while, others look like they are in pain.

It made me wonder about my past self-harm behaviors. They made me feel better, they made me feel, they caused some form of “feel good” trigger that others could not understand. Intense workouts seems to do the same type of thing. Interesting… It is definitely a much better coping mechanism. Sorry, I am all over the place on this post. I share my interaction with her because after class I tried to talk to her again. There were several things that felt awkward, but I did not know what they were or why, again.

Until, I was in the car on my way home.

I felt much better after leaving; Ariel had fun in the activity center so I was happy about that. As we sat at a stop light I started laughing hard, saying aloud, “Oh, my gosh I feel embarrassed.” Ariel asked me about what. I shared with her what I had said about not having friends and then, realizing that everyone was looking at me oddly because people do not usually say those types of things. I then, realized that some of them were looking at me with faces that may have been “I feel sorry for you” types of looks or something. It made me feel sad.

I laughed again thinking how funny I sounded being so matter-of-fact about not having friends.

I thought how confusing it must have been for the ladies because my expression was stoic. I was not sad it was simply the truth. In my mind, I would love to invite more people because I never want the class to end – EVER! (Unless I get bored and find another workout. ) However, I was struck again with embarrassment and sadness. (All of this through the eight stop lights on the way home.) I had every moment when I have been asked to “invite friends” to some sort of function flood my brain along with the emotions. At school, at work, at church, to parties, now at the Y. I have not had friends to invite. Either I only had one friend, who may or may not have been interested in what I was doing or I had no one.

I thought how silly I would have sounded to the women had I shared the whole truth, I have no friends, except online.

“Yes, ladies my only friendships live hundreds or thousands of miles away in other states and countries, who may or may not be using their real names!” AND I LIKE IT! Don’t get me wrong, I do want friends in real life. I live in a constant conundrum of longing to have a friend in real life and enjoying my solitude. There are days when I desperately wished I had someone to come over to my house that would just help me as friends do, or comfort me when nothing else can. However, in my experience I tend to take on the role of “comforter, helper, problem solver” for them. It drains me and tires me leaving me unable to share anything that I am going through.

I do not feel sad about not having friends until I am asked to invite them somewhere.

That goes for social media too. I do have several “friends” on my facebook pages, but when I am asked to invite people or share, I get that same awkward feeling and my head fills with the words, “I have no friends.” I feel sad about that too, but once again I am not exactly sure why. I see other people who I follow that have a TON of “friends” and it makes me wonder why I do not.

Is it because I am not able to maintain my social interactions?

Is it because people genuinely do not like me? Is it because no one can relate to me? Is it because they are just not interested in me? Are these the reasons why I do not have friends in real life? Am I too strange, awkward, and/or arrogant? I ask these types of questions without any emotion. Sometimes I am overcome with emotions when I think if it other times, like today it is merely wonderment. I do not feel badly, I just do not understand nor do I know how to change it.

I still find my social awkwardness funny, despite all the other emotions that it stirs up.

I am not sure if others know what I am talking about, it would be nice to know if anyone else feels these types of things. I wonder if there are others who feel that constant confusion of feeling lonely, but liking to be alone. I do wish that I had someone else with me at times to point out these awkward situations to help me process and guide me into feeling ok about it. I will do it on my own, or I will be remaining oblivious, as I have done in the past, but every once in awhile I really wish I had someone to share this stuff with, another socially awkward person perhaps? Another introvert type that could make me laugh when I say inappropriate things?

Hey, is anyone willing to Skype with me to my next Piloxing class? Ha ha ha

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04/26/13

“I Was Not Raised To Say Good Morning!”

I did say something like that – it is true. It is kind of a funny story, the reason why those words came out of my mouth. It was when David and I had moved across country. We had to live with his mom and stepfather for several months. They were challenging months. One indecent that still sticks out is the day David and I were requested to have a meeting with his stepfather and mom. It was something that I will never forget because it confused me tremendously. Many social situations happened while living there and in that town that awakened me to such utter confusion that I was in a constant state of anxiety.

I had never been around such social dynamics and I was traumatized.

On a daily basis, I was confused, hurt, angry, sick, and my head was reeling nonstop trying to make sense of my surroundings. I had no family or friends and only David to rely upon. At least, I understood somewhat the traumas that I felt with my family. They were familiar and I had learned how to protect myself, maybe not in the healthiest of ways, but I could protect myself nonetheless. However, when this situation took place we had only been there a few weeks so I had not spiraled into fear, confusion, and severe anxiety yet.

Back to the story, I will try to stay focused.

There had been several days of tension in the air. I was clueless as to what was going on, but I felt it. It was causing my head to feel dizzy. I did notice that tones, body language, and words seemed different, but I had no idea why. I asked David about it and he did not pay that much attention to it. His stepfather had been in his life for around 23 years. This man violated David and his brother’s space, time, and anything else in their lives that he could. So David was in his own protection mode and knew how to ignore the man, or finds ways to make himself feel better.

The minute I met the man I did not feel comfortable around him.

The only way I could describe at the time was he seemed very negative and grumpy. When he walked into the room, it seemed to zap out all the life in each person. Nothing made him happy, but me being the hopeful naive person I am, I thought we just needed to try harder. I thought maybe David was too negative and possibly God was trying to show us how to be more compassionate. Well, there are times when I just lose all compassion toward a person, especially when I have tried very hard and they accuse me of being disrespectful.

OR rude!

Keep in mind that David and I were in our early thirties when this took place. We were finally able to set a time to meet. It was in the evening, we sat in the living room. I did not know what to expect. I felt like a teenager who was about to be grounded or something, but I had no idea what I had done wrong. I had gone over everything in my head trying to figure out what this was all about. Then conversation started with the stepfather voicing his frustrations at us and feeling as though we were disrespecting him.

I was confused.

Now they told us that we were welcome into their home to stay as long as we needed. As far as I knew, it was rent-free until we were able to get our own place. David and I were still unable to find work, we had only been there a few weeks, and in the midst of that, we had gotten married.

I did not understand what this man was talking about.

Much of it is a blur to me now because I became so angry and confused that the words were jumbled. It came down to this, the stepfather said; he was upset because we did not say, “Good morning” to him every morning. WHAT??? I sat there staring at him in disbelief. He proceeded to share every bit of grievance he had about us not acknowledging him if he came into the room, and being disrespectful by coming and going when we pleased.

David was angry.

I was stumped. He continued with his banter about not saying good morning and I told him, “I was not raised that way.” He shook his head at me and said, “I do not believe you Angel, I saw you with your family when they were here.”These words shot out of my mouth, “That was my dad and step mom! I did not grow up with them. Besides it has taken years for me to even be like that with them.”

I went into HOW I was raised.

I grew up with my mom and in that house you did (do) not talk until after she has her morning tea. There was never a good morning. I was not allowed to say that or ask questions, or request breakfast until my mom had her first cup of tea and cigarette. (I was making my own breakfast by around age 6 or 7, probably earlier but I cannot remember clearly.) What he saw with my dad was years of weekend visits. In my home, you were lucky to get a grunt if you walked into the room. I was constantly told to be quiet, settle down, and stop asking questions. I was told things such as, “I don’t know, I am tired, stop asking me questions, leave mommy alone.” I was not allowed to speak to my mom when she came home from work. I had to give her at least 10 minutes before I bothered her with anything.

My mom was not trying to be mean; she needed that time to process.

She requires uninterrupted time alone to wake up in the morning to adjust to her day. If her routine is interrupted, her entire day is ruined. When she gets home from anywhere, she needs time to adjust. She has to change her clothes; many times, she needs some food, and then, her tea. After that, she is able to function socially. Also in my house, “please and thank you” were not that big of a deal. Other things took precedence.

It wasn’t that I was raised to be rude, but we did not spend our time saying such things.

It was that those words had real meaning to them; they were earned so to speak. My mom did not force me to say them. We said them to each other when we meant them or thought of it. I do think that both of us would have benefited if we had said those types of things to each other more often. We had too many other things on our mind than to think about things like that. It is a little difficult for me to explain.

That is how I was raised.

Not to mention by the time the “stepfather” incident happened, I had been living on my own since I was 18 years-old for the most part. (I had to move back home a few times, but about 6 months was the longest stretch.) I had my own routines. I had lived alone for most of that time, but when I met David, I had been alone for something like a year and half I believe. I could not believe the behavior of a grown man getting upset at such foolishness. However, when I thought about this situation I recalled how many other people have gotten offended at me for not saying good morning.

They have gotten offended at me not addressing their presence.

If I am busily working, I may look up at you, but it is as my mouth is sealed shut. I have no words. My mind is too busy processing other things. If it is first thing in the morning, it is raging with all sorts of thoughts from trying to discern the dream I had to wondering if I can recall some famous event that happened on that day years ago. It could be anything. I could be wondering if squirrels are fidgety or just anxious. I could try to figure out a more efficient way to clean the litter box.

Anything and multiple things are soaring through my brain.

AND let us go ahead and add how I could be freaking out on the inside because I smell someone’s cologne or food on the other side of the room! I could be so focused on not yelling, “What is that god awful smell?” that I just cannot stop all that I am doing and say something to you first. I can usually say it back if someone says it first, I most likely will not say good morning though.

I WILL NOT say that if it is not a “good” morning.

I will say, hi, morning, or give a head nod. I do not get offended if someone does not say it to me. At some point, in the day they will speak to me I am fine with that. Of course, my way of thinking does not work for passive-aggressive types. Their tactics of silent treatment do not work on me. I only assume that they do not feel like talking because when I do not feel like talking I do not talk.

I am not giving the silent treatment.

The point of my story is that I was perceived as rude and disrespectful and I had no idea that the person felt that way. The way that I was raised, it was rude and disrespectful if I did talk before someone else spoke to me. I could not understand his anger or hurt by the situation. All though, the man had other serious issues. He even went after David after he had excused me because of my up-bringing.

He told him, “You know better.”

As if, David was supposed to have made me aware, or something. Um, we were in our thirties! David had been in graduate school for seven years prior, I had been in the workforce since I was 16 years-old, both of us had been married and divorced, AND we lived on our own for years. None of that mattered because he could only see from his perspective, which was distorted by offense. Truth be told, I was offend too because of his offense. People seem to forget about where others are coming from when they are clouded by offense, myself included. I was not raised that way, I was deeply offended at what I felt was childish and ridiculous, but I also tried my best to do small things to help this man feel respected.

He did let us stay in his home, even if David’s mom may have been the driving force behind that.

I still felt that he should be respected and that I would try. I do not think it much mattered though, he is just one of those people that no matter how much you try it is never enough. I will say, it was awkward and a challenge for me to remember to say “good morning.” It still is, it is a challenge for me to remember to say say thank you or other ”polite” things. Not because I do not feel them, quite honestly, the words seem to have lost their weight to me. Any person can say words flippantly and without true purpose – I like to show my appreciation through actions.

It feels more comfortable to me to do something in return for someone than, to only say words. (AND I will not say them unless I mean them.)

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04/23/13

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

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

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

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

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

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

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

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

However, I DO have hope.

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

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

Aspergers – Narcissism: NOT The Same I

Aspergers – Narcissism: NOT The Same II

Aspergers – Narcissism: NOT The Same III

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

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

Is this different from empathy in some way?

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

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

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

I do this too.

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

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

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

Let us take a look here.

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

Simple enough, huh?

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

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

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

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

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

News flash, the general public is hurting.

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

Think about it.

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

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

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

You could end up with silence and them walking away.

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

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

Positives About My Autistic Son

“I Do Not Understand”

Come On! Enough With The “Lacking Empathy”

“What Is The Cat Feeling?”

My Autistic Son Comforted Me Today

Daniel, Me & Empathy

Things that I read.

How I Experience Empathy

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

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

A Radical New Autism Theory (Radical??)

How to Test Your Empathy

It’s Hard to Live with Someone Who Lacks Empathy

Empathy

10 things not to say to someone with Asperger’s

How to Relate to Someone who Has Asperger’s Syndrome

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04/21/13

I’m Too Tired… Product Of Overload

I was going to attempt to finish the post I was working on, but my brain is just too exhausted. I am fighting with an array of emotions for many different things. This week was a rough one for Daniel. He refused my help on several days, and I was not able to bring any peace. This can make me fall into sadness and negative thoughts. The reason is that I get overwhelmed with thoughts like, “I am the only one who knows how to help him and if I can’t then what?”

I have fears run through my head about never finding a positive solution to help him.

I know that this is not true. However, when I do not get sleep, breaks, and the school schedule is overwhelming for the week, I get tired. As I write this I seem to have an apologetic tone. In a way, I do feel like I should apologize. I have this feeling that I should be sorry for not having all that it takes to be a parent that is fully capable of handling every situation that arises. That sounds ludicrous writing it out, but I am sure I am not the only mother who has or has had those thoughts.

I have given my energy to helping all three of my children and doing my daily tasks.

I should not feel as though I am less for not being “spot on” with everything this week. Sometimes I have no idea what Daniel needs, MOST of the time I do. However, those times when I think of everything possible, I do everything I can think of, and then, go in search of answers and still find none, those days seem to wipe out all the other days that I do have the answers and can help him. He is much better today and this week looks promising. I am drained and quite honestly ready for school to be over.

I need a boost to get me motivated for the last couple of weeks of school.

It is not helping that I am extremely frustrated with standardized testing. I have read entirely too much about it the last three days and it is getting to me. I think if I take the rest of the day off from thinking about school stuff tomorrow and reading that information I will do much better. I hope. I need a break from negative language starting from how people talk about themselves or our world, to how people talk negatively about autism. I thought about what could have happened to Daniel this week if he was in a school setting.

I thought about how he could have been treated.

I thought about how people would have perceived him had they witnessed what he was going through. I knew that most likely they would not have considered all that he had done in the two weeks prior. Not because they are inconsiderate, but because the way we process and are affected by change, environments, sensory stimulation, and social dynamics are so foreign to them that those things would not be in the forefront of their minds. They would not have considered all of the social activities he had done. They would not have considered everything that he was still processing from all those situations. They would not have thought about all of the sensory input and social settings that his brain was still pondering.

Without clear context for some because many of them were new for him.

They would not have considered the weather changes, pollen floating around, or how the pressure changes affect him. They may have thought that he was being unruly and obstinate by refusing to take his tests or work on his research paper. Tests that are about 50 questions with reading comprehension and math problems that he has not done before. A research paper that I have had to convince him repeatedly to work on over the course of several months that is due soon. He still sees no purpose in it and this coming week I have to find a way to convince him to try to write a few paragraphs of it.

Sigh… that makes my heart hurt just thinking about it.

He is feeling better, to force him to do so much handwriting, well that could be too much. Granted he has had several months to work on this, but it is a challenge to convince him to do assignments unless he finds a good reason for it. I tried many different ideas and repeated some. The one that worked this time was reminding him how much he loves sea turtles. I hope it lasts through the writing part. I could be wrong about how he may have been treated. We could find a great school staffed with grand teachers who are able to devote such time and energy on thinking about my son’s needs and how his brain processes.

It is not out of the question.

The reality is even the best teachers are not always equipped with the time or resources for that. These thoughts do ring through my head because when I cannot help him, I begin to question whether homeschooling is the best for him. When I thought about all of that, the one thing that did help him when nothing else could was reminding him that it was ok. When he said things like, “Why do I do this?” I explained to him how he is affected by all of those I mentioned earlier. It helped to understand that nothing was wrong with him, we just needed to find better ways to help him decompress. Some of his behaviors were not ok and the positive is that he knew that.

He tried very hard not to fall into them.

When he did, he apologized or said that he did not know what else to do. Now that is HUGE progress. I can understand not knowing what else to do. I can understand much of what he was feeling; I only wish I had the answers to help this week so that both of us could have had a better week. The most important things that happened this week was that Daniel knew that he was accepted no matter what and that he was understood. The week is over, we are moving on, I had to process, (I have my own overloadeness that needs to be processed as well.) and now I am letting it go. All is good despite the freaky weather! (Ariel and Joshua did just fine, they each got extra alone time with me or David. I have found that helps a lot when we are having a rough week.)

Picture time.

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04/18/13

Family (Dys)Functions

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

Or lots of hugging!

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

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

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

I was told it was “a joke.”

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

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

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

I already had this realization a while ago.

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

I did not catch many that were directed toward me.

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

I am grateful.

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

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

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

I do not feel wrong.

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

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

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

They are not thinking like you in the slightest.

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

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

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

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

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

Changing minds and perspectives is a gradual movement.

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

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

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

It requires breaking down defenses and being open-minded.

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

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

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

I no longer fear going to family events.

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

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

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

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

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

Some pictures of the event.

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04/17/13

Book Review

I was asked to review Asperger’s Sibling Support: 15 Practical Tips for Parents/Caregivers. The book was written by Trish Thorpe. It is written from her experience being the younger sibling of an Aspergers sibling.

I was very interested in reading it because I have my own concerns and challenges with raising three children. One diagnosed with Autism and my other two who show many traits. While they are most likely on the Autism spectrum, (working on diagnosis) there are similar issues that happen in a family with Autistic and non-autistic siblings.

As I read the book, I did have to pull out of my own Aspergers thinking and not take words literally or personally. I think that is a good thing. When I read her words, I was able to see from her perspective as well as place others who are in my own life into her position. In doing so, I was able to see how much of her heart to share and help others was written into this book. I share that because there is much talk about how Aspergers/Autistics are perceived as people that lack empathy. It is a touchy subject and it is addressed in the book briefly.

My personal experience reveals otherwise, however, from others my actions and behaviors have been perceived as lacking empathy. In every case, we are individuals and express ourselves in unique ways.

I felt that the book was an excellent guide to help with children, especially younger ones, in order to help them to understand their world with an Aspergers sibling. I think it is a beneficial tool for parents to help know how to communicate to their children about Aspergers; the challenges and the benefits of Aspergers.

It gives great bullet points and short precise helps. The book shares simple examples that can be applied quickly and with ease. It gives insights as to how to help better understand and have compassion for their sibling with Aspergers, but it also addresses that the needs of non-autistic siblings should not be ignored. I think that is extremely important too.

I believe this would be a great book for anyone who has a child(ren) on the spectrum to help them know how to communicate to their other children. It may be a useful guide to teachers as well.

I really liked the way that she was positive and gave more resources to help seek support for siblings.

I have linked above to her book and website for more information.

Go check it out!

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04/13/13

Our First Autism Awareness Event, Um …

Last night, I took the kids to an Autism Awareness event in town. It is the first time that I have been able to take them for various reasons. It was the first year that I felt that Daniel would be able to go and enjoy himself and want to participate. I was not sure what to expect. I tried not having any expectations. I knew that I was walking into an event where it was called “awareness” and that word can have multiple meanings depending on each person’s perspective. I was not sure if the organization that was heading it was for acceptance or had other feelings toward Autism.

I had done my research about them and by all that I read they seemed to be very accepting.

Though, I still was not sure and being that I had so many negative experiences where we lived before I am very cautious. Little history, I had several churches claim they were accepting only to discover they thought Autism was demonic and/or Daniel needed healing or deliverance. NOT. I also, reached out to another organization that claimed they were there to help Autistic children with therapies, cost of therapies, and connect families for support, only to discover that they were pushing a cure Autism agenda. That is only a couple of experiences I had, I do have a few more, but I think that is enough info to explain my cautious attitude.

I kept my guard up and knew that if I felt or saw any of those types of things that the kids and I would just leave.

Thankfully, it was in a school only minutes from our house, easy to find and it always helps when we do not have to be in the car long. All the kids can get car sick, and Daniel still has moments of car anxiety that can be triggered going to new places. It was at a school in their gymnasium. We had to register when we got there and everything seemed very smooth and positive. The only thing that bothered me was that they had a DJ, blaring loud music that did not seem appropriate for young children, who have sensory issues. We could feel the vibrations out in the entryway. It was thumping and pounding, Daniel started to ask why his body was vibrating and why was it so loud.

I told him that we did not have to stay if it was too loud, but he said that he wanted to go in.

Everyone was very nice, but no one talked to us. They all just looked and smiled. I took it upon myself to take the kids around to play the games and make some crafts. They had a table sitting out with T-shirts to buy, but I was not sure what that was for until later. I was a little confused by everything because it was my understanding that it was an event for families with children who are Autistic and who have disabilities. They said on their website, to come help celebrate autism awareness month by coming to the event and that they provide this program as a service that is for families in our community raising a child on the Autism spectrum. (I paraphrased that.)

Here is where I had expectations.

What I read about the night indicated to me that it was for families raising a child(ren) on the Autism spectrum and to share information and resources offered by the community. No one spoke to us about the dog therapy when we went over, several times, to see the dogs and pet them. They talked to themselves and the dogs just sat there being pet. When I went to the table where the T-shirts were to see what it was about, no one talked to me except to ask what size shirt I wanted. I said that I did not have any cash; she asked if I had my checkbook. I did not. I had not expected to be giving money. I clearly did not understand the purpose of the event. She seemed to not know anything about what the organization offered and directed me toward a several handouts, but her main focus was for the fundraiser.

In my reading of the information on the website, which I read several times, I did not notice the fact that it was a money-raising event.

I could say that was my own confusion, I honestly do not know. Maybe I read things to literally, I do that you know. I was very pleased to discover that they have a positive outlook about Autism. There were several people wearing shirts that had the puzzle type of logo, but the images swirled into words that said, “Autism Embrace the Amazing!” Their organization uses their funds to provide help for families who cannot afford therapies, help with legal issues, getting SSI information and assistance, they help advocate for the rights of individuals with disabilities, and have parent support groups.

Their main purpose is to improve the life of young autistics through support and acceptance.

That made me very happy, and the atmosphere, though it felt odd to me was not negative. I am glad I went and I think the more events I go to the more I will get a feel of how to interact. Possibly, another event that is more directed specifically toward Autistic families will be a better fit. It was a wonderful experience for the kids. They had so much fun playing with all of the sensory toys and running around the huge gym. I do admit, I was a little worried when I realized we were in a school building. I never had to think of it before, but now my mind goes there. What if someone without understanding was to come in and attack solely based on the false perceptions of Autism from media and certain circles. I hate that I was thinking of that, but I did.

I had to scan the gym, look for the exits, think of an escape route, just in case.

I was not paranoid; I only felt that I could not be that naive to believe that everyone is accepting of Autism. That is what all of the negative media has done to me – it has made me cautious and feel that I need to protect my children from ignorance that could turn to violence. I did not think of it long, only to have a plan and move on. Because of that though, when Daniel was digging around in a toy bin for what felt like forever, (he could not decide what he wanted) and I lost sight of Ariel for a moment, I felt anxious. I scanned that gym like a hawk. When I located her, I told Daniel that I would be right back; I did not go far at all to yell for Ariel to come closer. However, when I turned around Daniel was gone.

Again, my eyes scanned the gym like a hawk.

Panic started to set in because I could not see him, finally, I spotted him. He was walking very fast straight for the exit. I could tell that he was in a panic from behind; he was walking faster and faster. I was yelling his name, his hands were flapping, and everyone just watched. I thought that was very strange after the fact. I told Ariel and Joshua to stay there and I ended up in a full on sprint because he was heading out the exit doors, and no one stopped him. :-/ I caught up to him, put my arms around him to give him a squeeze, and then, turned him around. His face was red, tears were in his eyes, and he was breathing heavy. He could not even tell who I was. I kept looking at him, squeezing his arms, saying, “Look Boo, it’s mommy. I am right here.”

After about the fourth time, he was able to recognize me.

Then, he said, “I thought you left me.” I reassured him that I never leave him and that I was right there. He apparently, did not hear me when I said that I would be right back. I said it three times, but I think it was all too much to process with the noise, toys, and excitement. I found it odd that no one stopped him or tried to stop him after they saw me yelling his name and running. I would have stopped any young child heading toward the exit doors without a parent, but that is me, I guess. He does look older since he is so tall …

I think writing this out indicates that I do have certain expectations.

I did not realize it, but I do. Overall, I am very happy with how everything went. The kids loved it, Daniel enjoyed himself, and the noise did not affect him the way that it used to. Even 6 months ago, we would not have been able to stay very long. We stayed for an hour and a half last night! We all left feeling good. The other thing I discovered was that the event was to help raise money for their Autism Awareness walk that is happening in a couple of weeks. I would like to participate, but I do not think I will be able to. I do feel that it was good for us to get out and try it. It definitely helps me with my social anxiety. I was confused at first, but then, I sat and thought about all I had observed.

I watched the young and older ladies line dance to music like Cotton-Eye Joe and I Am Sexy and I Know It.

It felt off, but I did enjoy seeing some of the kids that were there having a great time dancing. Joshua got his groove on to some songs and then, Daniel jumped into a little moves too. It was great! As I observed the volunteers and some of the other people who seemed to know each other, the words, “This is for them.” popped in my head. I realized that there were sensory toys and stations set up in the gym, but the bulk of the event seemed to be geared toward the people that already knew each other and for those who are not Autistic. I had a moment when I understood the lack of collaboration between autistic adults and autistic events.

It is one thing to read about it from others, it is another thing to experience it.

While, I fully understand the need to do things that will reach people not on the autism spectrum, I wondered if they would be willing to work with adults on the spectrum. It also, made me wonder what kind of event could be done for us in my community. I see us do a lot of campaigning and activity via the internet, but I have not seen too many activities that are done by Autsitics at a local level. Though, I have only thought of this and I have not done much research. There could be things, I just need to look. However, I do know that in my community there is not anything. I have been in communication with a woman in town who started an Aspergers adult group last year, but it dwindled due to several reasons.

She and I have still been trying to think of activities that would be good for the group.

However, life has been a bit hectic and full of activity so I have not been able to spend much time on that either. I think I am going to set some goals that will be attainable in the near future with this, but I also plan to set goals for next year’s Autism Awareness/Acceptance month. I plan on reaching out to this organization and meeting with another woman in town that heads up a local support group to get a feel. Of course, my first plan is to get connected and learn who these people are as people without any pressure on myself about these goals I am thinking about. I want to meet others who are working with the autism community in my town. I am hopeful because of the positive attitudes I have encountered so far, in every new social adventured, we have tried.

I am excited because they have been accommodating, accepting, and kind.

I am not sure where I am going with all of this, but I am processing. I do know that I would like to be more active in the community. I think it would be great if people were willing to listen to an adult autistics locally. Who knows, if I were to speak up maybe I could find others around here who would like to as well. I would like to find more mothers who are autistic themselves, I think it would be beneficial to find more women in my real life, but if that is not the case I would like to be open to other mothers who I could connect with. You never really know who you can find some sort of bond with, it may not be related to being a mother or autistic at all. I could find a friend at the YMCA in one of my classes.

Something has shifted in my thinking that I noticed last night.

I did not feel so lonely as I looked around and saw everyone talking, laughing, and hanging out. I did not feel hurt when people did not talk to me. I was satisfied with smiles and short conversations. I was not seeking them to understand my son or me. I was simply content and at peace observing, understanding certain dynamics, and enjoying all the children and my children. I was not offended at the lack of “autismness.” I understood what and why they did what they did. I think it sunk in for the first time that if I want something to be “Autism Friendly” that I am going to have to jump in and do something about it. I will be pondering this. Next! I can’t wait to write my next post sharing about all of the awesome things that has happened with the kids this week. It makes my heart overflow with joy when they are happy and proud of themselves!

I feel that last night turned out to be a spectacular evening on multiple levels.

Pictures!

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04/5/13

Celebrate Good Times, Come on …

I am quite chipper today. I have a huge sense of accomplishment in multiple areas of my life. I feel like celebrating it! I feel much better about Autism Awareness/Acceptance Month. I am excited about all of things that have been happening. (Look here Autism Acceptance Month.) I dealt with my personal issues and anxieties. I finally, came to the conclusion and acceptance, once again, that I will never make everyone happy.

I will participate in my way and not feel badly about how I contribute.

I think my fears are triggered by the familiar feelings that I have from church settings. (long story) I have moments when I feel as though I am an Autistic and Autistic parent who does not belong in the Autism community, and other times I am overwhelmed with understanding, belonging, and acceptance. I am not sure how to articulate those feelings very well.

I am not sure if others feel that way too, but I thought it was worth sharing.

I believe I have written about it before, however, my mind is spinning with all sorts’ positivity. This week I FINALLY fulfilled many of the goals that I have been talking (writing) about for what has seemed like decades. I got Ariel and Joshua signed up for gymnastics, which will start next Saturday. While they are doing that Daniel and I will enjoy some swimming action. I signed Ariel up for gymnastic camp and Joshua into basketball camp for the summer. Daniel is signed up for Music Therapy social group for the summer session. I am waiting on his evaluation to determine if he qualifies for a Medicaid Waiver.

I hope he qualifies because his therapies will end when school ends.

The Music Therapy is covered under the waiver. They provide OT, Speech, academic helps, reading, sensory integration, as well as use the social groups to connect all aspects of the therapies. He would receive an individualized evaluation to work on his specific needs. It would be so perfect for him. He is naturally drawn to music and he uses it to help him process what he learns already. He loves everything about instruments, sounds, rhythms, beats, and on and on. He has taught himself several songs on the keyboard. He keeps asking for a “real” piano. I am keeping my eyes open for some great miracle of a bargain in hopes that something may pop up.

I also, registered Ariel into fine arts classes with a home school co-op.

She will be learning from a technically trained artist for drawing and painting 101. I think this will help her with her natural talents as an artist. She also decided to take Beginning Strings, which is taught by an instructor who holds a Master of Music and Suzuki Pedagogy. We will see how everything goes. It is fantastic to be able to experience these things. I admit I was a little concerned, I have seen some home school co-ops that have not been as professional. Not all are alike and I am NOT generalizing, but still I am not going to pour money into something unless it is worthwhile and will be beneficial to my child’s learning.

I think you know what I am trying to say. (I mean no disrespect to anyone, please know that.)

The woman I spoke with said that there are many girls her age taking the classes. Ariel and I are elated! She has been asking to make friends with girls, but it just has not worked out. I have been taking her with me Monday and Thursday nights to the YMCA to hang out with other kids. It has boosted her spirits. She really needs some time of her own away from the boys. She has been requesting it and I am happy to have a place to take her that she is enjoying.

I am amazed at my sudden fearlessness.

It is as if something has clicked. I have gained a whole new voice and perspective about myself. I have surprised myself at how outgoing I have been. I do know that I can be very outgoing, but then, be extremely introverted as well. Being introverted does not mean being shy or unable to be outgoing. I have noticed that after my social encounters I have taken the down time that I need. For instance, when I come home, after getting everyone else undressed, re-clothed, and taken care of, I take about 15 minutes to myself. This has made a huge difference in my stress and anxieties. I have also stopped worrying about what people are doing, or “trying” to tell me.

I assume that if they have something to tell me they will.

If they do not and expect me to “read” between the lines, that is their problem. I have no time for that stuff. I will no longer spend unnecessary energy on trying to figure out the communication twistings of others. It is their responsibility to tell me what they want me to know. If they expect me to read their mind, well that is simply unrealistic. I have taken on that mindset in my closer social circles. When I meet new people, I now go in not worrying about whether or not they will accept me. I go in with a positive hopeful attitude. If they like me and want to get to know me, great. If not, oh, well. I have boundaries and understand how to use them now.

Before I was desperately seeking for people to understand me, accept me, and acknowledge me!

The root of this issue was that I had not done those things for myself. I had been swallowed up in searching for an identity through others without realizing it. It is good to receive those things from others, but I should not look to others for them. Much of it had to do with being confused for so long about who I was and why I thought so differently from others. Why was I such an odd, quirky individual who did not even seem to fit in with other odd, quirky individuals? I have concluded that some days I feel perfectly fine in my own skin and other days I do not.

There are times when I can be extremely social and outgoing.

There are other times when I cannot. I will go with each cycle of myself and live happily accepting all of my different ways of being. Currently, I am in an outgoing, adventurous type of cycle. While I am in this cycle, I will get as many goals accomplished as possible. I will try what I want to during this time because it will give me the foundation of doing those things when I feel less adventurous. (lessening my anxiety in some ways) On Monday, I got to my cycle class late and all of the bikes were full. I looked at my aunt and said, “Bummer.” Then, walked down the hall to the next class, thought it was Zumba and decided to find out.

I walked in and asked what class it was; she said that it was Zumba.

I decided to give it a try. It was fantastic. I met several ladies that were very nice. I enjoyed myself and actually did not mind that much that I was in a room with a bunch of sweaty women, looking at a wall of mirrors! In the past, I would have gone home after missing out on the cycle class. I know I would have felt deflated. I did not this week, and last night I got to do Piloxing for the first time. Guess what? I love it! I will be going to spin class and Piloxing on a regular basis. That has changed too. I AM doing things for myself and doing things that I enjoy.

I am not only voicing when I need a break, I am saying, “I am taking a break.”

I am not sure if this side of me will be tired out by tomorrow after my family throws me my birthday party. My dad chose this week because last week was Easter and that would not work out for all of us. So tomorrow, I have family coming in, the party will be at my aunt’s house, and we will have another social event. I am looking forward to it. I think it will be good. Easter went great and we all had a great time. No meltdowns and it was very enjoyable. Daniel played on their piano most of the time.

I know that I will need to take more down time after this weekend.

I have been going for two weeks straight with all sorts of new things and social situations. Yesterday, I took the kids to get their eye exams. I am so thrilled with how well it went. The doctor and nurse were perfect. They were so accommodating. They explained every detail for the kids as well as for me. They answered the plethora of questions that each of them had. I really appreciate it when people address my children with respect like that. The kids and I had fun; it was getting to be a bit too much for Daniel and Joshua after a while. We were there for almost three hours. However, all went well and we took the day to recuperate.

Ariel and Daniel are getting glasses.

Daniel is not too excited about wearing them. That may be a challenge. It all feels surreal. The kids and I have been doing so many more things out of the house and it has not made things worse. We seem to be much happier and calmer. Who would have though? And now I will celebrate these good times because as you know, it could change at any moment. Not that I am expecting horrible things, I am only expecting the best, preparing for the possibility of the worst, and enjoying all the great along the way! There are more things to write about, but I seem to be too babbly even for myself. I’ve been this way for a couple of days …

I will celebrate the last two weeks and the major changes in myself!

Go Kool & The Gang! Lol!

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04/1/13

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.

I 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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03/24/13

A-ha! Moment & Some 80′s Music

I just had an “a-ha” moment. It finally sunk into my head that I am not the problem. Hear me out, now I am happy to own up to any of my wrongdoings. I am usually the first one to point them out and confess them with utter apologies. However, I am not at fault for every single mishap in relationships. I knew nothing of boundaries, being that my violations started at the age of five. You cannot have healthy relationships without healthy boundaries.

I read this today that gave me much clarity into the reasons why I have had such difficulties with boundaries.

“Some persons, however, have great difficulty setting boundaries—they may even believe that setting boundaries is rude—and this difficulty usually derives from child abuse. But let’s be clear that abuse can range from subtle emotional manipulation to severe sexual and physical abuse. To the unconscious, though, any abuse, no matter how mild or severe, is an insult to personal dignity. It’s precisely this insult to personal dignity that explains why adults who were abused as children lack the ability to set appropriate boundaries. Why? Well, their not having boundaries served them as a defense mechanism in childhood. Most abused children know intuitively that if you try to do anything to resist the abuse, you just get hurt all the more. So setting aside any resistance means less hurt.” ~ A Guide to Psychology and its Practice (A very informative site.)

I have been made to feel that setting boundaries is NOT loving to others.

In order to survive throughout my life in relationships and even some work places, I have had to eliminate boundaries. If I set them, I was rejected in some form or fashion. Being that I felt rejected from childhood on my desires was to feel accepted and wanted. Thankfully, at some point, I believe my lack of understanding about emotional manipulation and my absolute need for solitude and personal space, I would become fed up and end the relationship. Some were easier than others were, but I got to a point where the cost of my sanity outweighed the cost of my desire of being accepted and loved.

Another positive thing about how my mind works is that I do not need people to feel complete.

I desire genuine relationships and to have long-lasting friendships, but I do not feel wrong or bad about myself for not having them in “real” life. I do believe I have some great friends virtually, but it does have its limits. There are times when I wish I had a person right here with me to see what is going on in my life. I would like to have someone I could go to in the physical realm. I have support from my family; however, it is still not the same. I think many people can understand what I mean by that statement.

I have been working on boundaries for a long time, but I have had such difficulty with it.

I was not sure why. I understood several things from an intellectual mindset – I could not connect the emotional aspect until I read that paragraph above about abuse and boundaries. I get it! (Inserting another link Setting Personal Boundaries – protecting self.) It explains why I have shut down so many times and disassociated from myself, environment, relationships, and felt the only way I could survive was to cut off feeling my emotions. This has been going on for decades and it explains why when I have been single and lived by myself that I did not do this in such extremes.

There is a lot to all of that though.

Now that I can see with clarity how my boundaries were violated, and how I took the path of least resistance I can start setting them without confusion. My recent lack of maintaining boundaries was due to my confusion about boundaries. I have been manipulated to believe that setting boundaries is the uncaring thing to do. It disrespects the other person. It shows lack of trust on my part. It is hurtful to the other person. I should be giving everything including my thoughts, emotions, belongings, etc…

I have been led to believe that I do not deserve boundaries.

I felt that boundaries only belonged to the person(s) who were in authority, or perceived authority. I had several specific things from life as examples, but I decided to remove them because I felt too vulnerable. I will share a list below and will link to Recognizing Boundary Issues if other would like more specifics about boundaries. (This is not only in personal life, this happens at work, in religious settings, sports, and it is in every type of relationship. Here is one link I will share The Lowdown On Abusive Bosses And The Unhealthy Workplace – Part 1)

I have felt as though I brought all of this on myself.

I was led to believe that I was the problem directly or indirectly. I was manipulated because of my belief that people are genuinely good. I still believe that most people are good, but I also understand human nature much better now. I was also very naive about abuse and manipulation. I am still ignorant about much of that. My mind has a hard time comprehending people being like that. In my gut, I have known when my boundaries were violated, but I could not express it.

I had no words for it.

I was unsure and full of doubt because I had so many people violate my boundaries and then, convince me that I was the one who was being inconsiderate, overreacting, or plain wrong. Though I knew, it became much easier to take the path of least residence. Why? Because I got tired and confused. Plain and simple I got tired of the fight and tired of looping about all of the possible things that I had done wrong. Or looping in hopes of discovering some answers to clear up the emotions I could not explain. I got tired of trying to stand up for myself. I got so beaten down emotionally that I would lose what little sense of self I had. Opting to believe that I was the problem because when I tried to discuss or bring up anything I would cause more anger and frustration – leading me to believe that in fact it was me. Why, did I cause so many people to become angry, hurt, or frustrated?

I am sure my lack of “appropriate” communication skills brought out angers in others.

I can understand how my directness could hurt people’s feelings, but I do not speak maliciously. I say whatever is rushing through my mind without a thought. I really wish my mom and me either would have been exposed to some healthy relationships or led to some resources long ago. I believe it would have helped her painful path as well as I mine. I could have used the list below for relationships of ALL kinds. Taken from How to tell if you’re being manipulated.

If you are in a relationship and notice a few of the following signs, there’s a high probability you’re being manipulated:

Your joy at finding love has turned into the fear of losing it. This is known as the “manipulative shift.” You will start feeling stressed at this point.
Sometimes s/he gives you a lot of attention and love, and sometimes he gives you the cold shoulder for no reason. You’re left wondering what you’ve done wrong.
Your feelings have gone from happiness and euphoria to anxiety, sadness and even desperation.
Your relationship feels very complex, although you may not be sure why.
You obsess about the relationship almost constantly.
You never feel sure of where you stand with your partner; you feel you’re in a constant state of uncertainty and anxiety.
You feel confused about the relationship and frequently ask your partner what’s wrong. He becomes angry or frustrated and he consistently denies responsibility for any problems.
You feel that you just don’t know how to make him happy.
You may frequently feel angry and resentful toward your partner, yet be unable to express it. Communication feels restricted or even forbidden, causing feelings of extreme frustration and even hostility.
You feel inadequate. You don’t feel as good about yourself as you did before the relationship.
Your emotions and moods are controlled by your partner’s words and actions

My goodness if I would have had this information!

“If you feel less strong, less confident, less secure, less intelligent, less sane, or in any other way “less than” anything you were before you met him (or her), you are being covertly emotionally manipulated.” ~ About Covert Emotional Manipulation

And these! Covert Emotional Manipulation Tactics, Stages of the Psychopathic Bond. However, not all of the relationships I have been in have been this manipulative. Quite honestly, they were just not smart enough. They were bullies and abusers, but they did not psychologically get into my head and almost destroy my very existence. Nope. They were violent, aggressive, said vile things to me, cheated, lied, and whatnot, but I have experienced manipulation and control far more psychological than their tactics. Not all of them.

It really does not matter at this point whether I had the information or not.

There is no guarantee that anything would have changed because the fact of the matter is that I still have and always did have social confusion that causes me self-doubt. I still have and always did have anxiety, which can distort my perceptions. I still have and always have had sensory issues that can also distort my ability to understand the world around me. I still am and have always been unable to read body language, read faces, understand tones, or have the ability to understand/express my emotions. I felt in my gut right and wrong, but I could only understand when another was violating another person’s boundaries. I did not understand when mine were violated.

I have not understood when other people set boundaries with me.

I have come to understand that. I have not really covered all of my thoughts on this topic, but I think I got quite a bit out to help me process my a-ha moment. I started to feel down about all of this. I started to feel shame and guilt. Then, I remembered what my therapist said the other day. She gave me suggestions to help with my cognitive accuracy and she mentioned music. I told her I had to be careful with what music I listen to because it can trigger a lot of emotion especially, if I am feeling vulnerable.

She then said, “Ok, you need happy feel good music. Well then, listen to 80′s music. 80′s music is all about having fun and partying.”

Lol! (Not all, of course.) I am not beating myself up for these things. I am taking this moment and accepting that what happened in the past happened, and the past can include an hour ago or even two seconds ago. I cannot change it, but I sure as heck can change what I do today. I already started setting personal boundaries a while ago and I have noticed my self-esteem getting better.

Today, I realized how important it is to set emotional and mental boundaries.

It is my head and no one else is allowed in there to mess with me! I have been slowly doing this, but today I truly understood the importance. My eyes were opened to how much I have allowed others to stay in my head filling it with negativity. I admit I have felt hopeless in this area for quite a while, but after my therapist telling me to be kind to myself and to understand that this has been going on for a long time, it helped me to see that I cannot change all of this over night. The reality is that we will encounter people like this in any area of our life. The best way to protect ourselves and help smite out confusion and self-doubt is to understand how they operate. It helps to gain control over what we can our own minds, actions, and responses – set boundaries.

I have a list to look at to help me each day taken from here SETTING AND ENFORCING HEALTHY BOUNDARIES!

Assess the current state of your boundaries, using the list below:

HEALTHY BOUNDARIES allow you to:

• Have high self-esteem and self-respect.
• Share personal information gradually, in a mutually sharing and trusting relationship.
• Protect physical and emotional space from intrusion.
• Have an equal partnership where responsibility and power are shared.
• Be assertive. Confidently and truthfully say “yes” or “no” and be okay when others say “no” to you.
• Separate your needs, thoughts, feelings and desires from others. Recognize that your boundaries and needs are different from others.
• Empower yourself to make healthy choices and take responsibility for yourself.

UNHEALTHY BOUNDARIES are characterized by:

• Sharing too much too soon or, at the other end of the spectrum, closing yourself off and not expressing your need and wants.
• Feeling responsible for others’ happiness.
• Inability to say “no” for fear of rejection or abandonment.
• Weak sense of your own identity. You base how you feel about yourself on how others treat you.
• Disempowerment. You allow others to make decisions for you; consequently, you feel powerless and do not take responsibility for your own life.

Ok, I am ending this now it is much longer than I wanted it to be – 80′s music! (Yes, I was an MTV kid.)

Blondie-Call Me

Depeche Mode - Just Can’t Get Enough (With Lyrics)

INXS – Devil inside

Erasure – a little respect (I’m so in love with you I’ll be forever blue … )

JOAN JETT & THE BLACKHEARTS – I Hate Myself For Lovin’ You (Rawr!!!)

Mötley Crüe – Live Wire (Woooot! ’cause I’m alive, live wire!! Hee hee)

New Order – Blue Monday (must-listen-addicted-to-song-happy-making-me)

Duran Duran - Hungry Like The Wolf (You know it!)

Orchestral Manoeuvres in the Dark - Electricity

Poison – I Want Action (Bwaaa haaaa)

Yazoo ( Yaz ) — Don’ t Go