Quality Of Food Is A Privilege

Forewarning, this is a bit of a rant, so I will admittedly say I wrote it in an emotional state and I may sound contradictory and/or quite enthusiastic in my execution of words … I possibly get distracted then, focused again. ;-)

I normally steer clear of arguments about food and the any sort of dogmatic perceptions that claim that changing eating habits can heal a person from skin disorders all the way to mental illness. It simply is not true for everyone, every body digests and has chemical reactions differently. We all have sensory uniqueness and preferences that differ from one another. We are all individuals, I will use myself as an example. If I drink a soda the sensory effects drive me batty and cause me physical problems. I do not like carbonated anything it upsets my stomach. The sugary substance coats my teeth and makes it almost impossible for me to concentrate on anything else until I brush them, however; there is a lingering metallic taste that stays. My stomach feels icky, I get a jolt of energy then, crash very hard leaving me with a headache and bathroom problems. It does not matter if I drink a Dr. Pepper or carbonated flavored water I cannot consume them and feel well.

Other people seem to be able to drink these without a problem.

My mother is another example that is interesting, for most of her life she would get sickly eating fruits and vegetables. She had problems with them texturally and physically. Her diet is still quite limited, but as she has gotten older she has been able to add things such as spinach, broccoli, and bananas to her regular diet. It is no secret that I have been and continue to be very health conscious when it comes to food. I think growing up with limited food sources because of funds and because of my mom’s sensory issues, food sensitivities, and negative associations with food in general made me passionate about my kids always having enough food — particularly healthy food. I also, read many books while pregnant about child development and nutrition. I took it as personal mission to feed my kids in the healthiest way I could.

I made all of my kids baby food from fresh organic veggies and fruits.

I steamed them and pureed them myself. They did not have regular sugar items unless it was made with honey for the first four years of their life … I believe I cannot recall exactly when. They still have never had a soda or some sort of fruit juice that is made with sugar. I did not give them very much processed foods and we are still not that big on eating a lot of it. Even the processed foods I did and do get normally have five or less ingredients and you can read them without needing a dictionary or google to search for them. I use coconut milk, water, oil, and any other sort of milks I find like rice, cashew, and almond because Daniel and I cannot drink milk. It makes us sick, however; Daniel can eat regular yogurt but not cheese. I cannot eat regular yogurt, but can eat certain cheese.

Our dairy is very limited. 

We eat in ways that many people do not. I spend a lot of time reading labels in the grocery to ensure we are in fact getting gluten-free, msg free, no high fructose corn syrup (corn suger) types of foods. I have done this since the children were born and I say all of that to express how much articles like this one upset me Chemist says omitting MSG cured daughter’s autism. I am all about healthy eating, if it were possible I would never buy anything processed because it makes me feel better. I agree with many points about diet in the article, however; I find it grossly irresponsible to suggest that autism can be “cured” simply by a change in diet. I am not sure if it is the mother’s perspective or how the author wrote it. It really does not matter, I have had Daniel on an MSG free, gluten-free, limited caisen, no artificial coloring, limited sugars of any kind for many years.

I was strict with the kid’s diet, and I admit to an extreme from the time they were born, until a little over a year ago and guess what, he was and still is Autistic.

However, in the past there were many days when I was thankful to get Daniel to eat ANYTHING! I had to feed him Carnation drink mix for about a year because I could barely get him to eat something unless it was white AND he refused to eat anything that was a crunchy texture and he refused meat, beans, or nuts. I was able to gradually introduce several foods that helped him. Did I see some significant improvement when I put him on a complete gluten free/limited caisen diet, yes. He was able to communicate verbally and his stomach problems were much less. Even recently, I accidentally gave him something that had “traces of wheat” (the one time I did not check, URG! I was very upset with myself.) he lost his words, his whole body basically shut down. He could not walk, his eyes were glazed over and he was in pain. When he eats certain foods with dyes or sugars his anxiety heightens, his sensory challenges are heightened, and he is irritable.

This is true for Ariel, Joshua, and myself too.

Although, there are other factors that could have contributed to Daniel gaining new abilities with his language during that time, he was around four and half or five when we saw a greater increase, connections could have rapidly been made in neural pathways that had not been able to before. That is one thought, there could be multiple factors, but I am not going into them. Though he benefits greatly, he is not cured neither is anyone else in this house. Of course, many people will benefit from eating a healthier diet, but we have to be realistic not many people can afford, are willing, or able to give up certain things in life in order to maintain this dietary lifestyle. It costs a lot to eat healthy! Fresh fruits and vegetables are more expensive and have a shorter shelf life than processed foods. Our biggest living costs is our housing and our food. We have eliminated many things such as cable, we do not eat out very often, or buy clothes at regular price.

I frequent Goodwill or clearance racks to find clothes for these constantly growing children of ours.

We try to keep the most cost efficient phones, packages ,and many other things to ensure that our living environment is sensory and learning friendly for all of us. As well as trying to get the least costly of healthy foods which is a task — grocery shopping is not fun for me and it is time consuming. Many Americans and many more in other countries cannot do this, they do not have the resources to even consider “eating healthy.” They do not have the time to walk around reading labels to see what is in their products. I will say that other countries seem to have a different perspective about their food and may not need to look at labels like we do. Those who receive government assistance have to stretch out each dollar and are looking for the most for their money. That does not make it easy to buy organic or products such as I have mentioned above. I find it frustrating that people assume that it is an easy fix to buy healthy when many people are eating what they know they can afford. From my own experience, I had no connection to my food. I did not know where my food came from growing up.

It was in bags, boxes, cans, our staple meat products were SPAM, bologna, canned tuna, and other canned meats.

The freshest meat we ate was bacon and that was rarity. I have thought about the foods I grew up on and I believe it was the cause of much of my stomach problems, but I had no idea how to read a food label until several years ago. I never thought about where my hamburger came from. I had no idea how animals were farmed or fed, I did not think about it. I think that is a big issue in our country we have no connection to our food or a healthy relationship with it. We are not taught good eating habits, we are bombarded with large portions, processed everything, and then continually marketed to about dieting. No one thinks about how “diet” foods are loaded with sugar and are highly processed causing all sorts of health issues. You can be skinny and unhealthy and you can be larger and healthy. (I am not sure how to word that I do not mean to be offensive so forgive me if that is not a proper way to phrase it.)

I know I am going off on a tangent here, but I think this can apply to many things.

People do not think about Autism. They do not connect to it so they follow the fold like sheep listening and believing whatever someone else tells them, mainly the media. These types of articles send me in an uproar because it is not sharing useful ways to help Autistics. They are making idealistic claims. They are feeding parents and caregivers the perspective that we need to be changed AND it can be as easy as getting rid of MSG! No, No, NO! What does that do to the child? How do they feel if they show any sort of Autistic trait after they have been “cured”? What if they stim? What if they have anxiety? What if they cannot communicate, have a meltdown/shutdown, or they find a new special interest that they cannot tear themselves away from, then what? Will the diet need to be reevaluated? These are the things I think of when I read articles like these.

I do believe that if the diets of people in our country were healthier that we would see a decrease in physical health issues.

I do feel that we would see some mental health improvements. I believe that, I am not going to tell you that you must do it. Or that I am absolutely positive that it will cure all of your ailments because it might not. You could give up all of the processed foods, soda, sugary drinks, candy, anything else, and after several months you may not feel better — you most likely would, but will you be cured of depression, anxiety, ADHD, Autism, or other physical/mental issues? I cannot say. I am healthy, I do everything that they say is healthy for a person and I am still Autistic. I still struggle with anxiety on a daily basis. I still have depression and have to work through those days when the world is all a distortion — isolation consumes me. I still have PTSD episodes and my sensory processing issues get triggered manifesting OCD tendencies at times.

The coconut oil did not cure me.

The clean diet has not cured me. It has not cured my children. I can tell you with certainty that we do much better when we are eating like this. We do not have the severe stomach problems. Our minds feel clearer and we can get through anxiety much smoother. This opportunity to eat healthy should be an option to everyone, especially in a country that is so rich. However, that is not the case. We have families struggling to feed their children. We have children going to school and getting the only meal they will have for the day and some of them don’t even get that! It is outrageous. It is a privilege for me to be able to buy the foods that I do and I do not take it for granted. I was one of those kids growing up without food. My mom did everything in her power to ensure that I was fed, but she starved herself to get me that food many times. She took on jobs at the schools in order to supply me with breakfast and lunch so all she had to worry about was dinner.

I was not hungry growing up, thanks to my mom looking for anyway possible to feed me.

Though, there are many food traumas that I do have, but that is another story. I will say that I knew full well that there were many times when I had no idea if we would have food, water, or electricity. It is one of the reasons why food is a special interest to me. It is also, why I too have done whatever was possible to ensure that my kids had the food they needed. We have been in positions where our pantry and fridge were bare. We have been through circumstances where we sought assistance from the government. We did receive it while I was pregnant with Daniel and Ariel and about a year after. Then, David changed jobs and we made too much, but not enough and that pattern has continued for us. We were blessed to have people in our lives that helped us during those times. We were fortunate also because they saw and understood the importance of our family being gluten-free and trying to eat as healthy as possible. I continue to live as though I do not know if we will have enough money to get the foods that we eat.

I am frugal.

I do not waste, I think about how to stretch out what we have, but my children have never known that feeling of fear of no food or hunger. To assume, that all families can easily adjust to a nutritious life-style and way of eating is naive. When I read things that imply that it is a simple solution to eliminate foods for any family impacted by Autism especially, as a means to a cure. For people in general I get frustrated and reminded of all those people who deserve to have food who do not. They welcome any food, and if they are a special needs family the importance of quality and specific foods is even more challenging to obtain. Many do not have the privilege to consider whether it is locally owned grass fed meat, GMO free, MSG free, minimally processed, no high fructose corn syrup (corn sugar) or completely go vegan. They are overcome with a moment of peace to have a plate of food. Some families do not even have a moment to consider food options.

How can we change this?

How can help people get the foods that would benefit them in some ways? I get frustrated when I see food banks or donation boxes filled with the cheapest low quality foods possible. Why do people do that? I have seen people give these types of foods and I have been in their homes with pantries overflowing with good quality products. It bothers me. I know I have a bunch of things wrapped up in this post. It is something that I care deeply about, but have no idea how to do anything about it. Learning about food and the connections to how it affects our body and mind should be a priority in Autism interventions. I do agree with that, I think it can be beneficial. I feel that offering specific ways to help find quality food/specialized foods on limited funds should be a priority to those in the Autism Community — many of us have a lot of expenses and limited funds. I am neither confirming nor denying that changing a diet will make things better for people, but I think it should be something to consider.

NOT for a cure, but as a means to improve quality of life.

However, I believe that we first need to acknowledge the people who cannot even consider “healthy eating.” That includes children, special needs families, elderly, and those who are disabled. Interestingly, The major players that have foundations to feed the hungry are those who produce GMO products along with being the front runners in our meat/dairy economics. It’s like the cigarette companies paying for “Quit Smoking” campaigns … However, currently, GMO is the only affordable solution to feed the hungry. There looks to be positives on the horizon for more affordable options to eat organic Walmart is bringing in “more affordable” organic products. I think this is huge and with the burst in our desire to eat healthy, understand, and connect to our food I believe there will be more options in our future. Possible solutions like lab-grown meat may become more affordable and a new way to solve world hunger. (I told you that I may get distracted.) I watched this documentary and it gave me many things to ponder A Place at the Table.

Other reads:

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A Day Of Pure Awesomeness!

Yesterday was a fabulous day, it was one of those days when everyone was feeling good and we seemed to be “flowing” as a family. I cannot think of a single day when all of us were feeling at ease and able to do things like we did yesterday — all in one day anyway. Despite the fact that I have had some stomach issues my mental state was rather calm — not feeling overly anxious or as if my mind was in a race with itself! Interestingly, the day before I was in an anxious state that was causing me some serious emotional ups and downs. I was pleasantly surprised to feel so good because we had planned on going to an Easter egg hunt at the Y. The kids have never experienced an Easter egg hunt except when I have done them in our yard. There was a small one at a church we went to a few years ago, but they were still fairly young.

They were very excited and I was excited for them.

I used to love going on egg hunts. My grandmother took me to the American Legion egg hunts when I was little almost every year. My mom really got into those types of things for me too so she always had our home dolled up in decorations and hid eggs and other goodies for me. Now that I think about it I have no idea how she did it because we had no money, especially no extra funds for such things, however; knowing my mom she probably took up some sort of extra work or sewed something for someone to get the extra cash. She always tried to make holidays grand. I digress … I went into a flashback of happy childhood moments. :-)

I was a little concerned about how the day was going to go.

The last few days Daniel has not been feeling too well either and Joshua has had a rough time of it with his auditory processing, more so than usual. I am not exactly sure as to why. It was such a beautiful morning that while I was at the store I decided to get them some bubbles and things to play with outside. I had hoped that this would help all of us with the excited/anxious energy while we waited until later in the afternoon to go to the egg hunt. It worked; we all played outside had bubble fun, and the neighbor gave us a frisbee while the kids played with that David and I had a nice round of badminton. I share that because it is a bit of a big deal to me that David came out to play too. He is not a fan of hot weather or being outside for very long.

After that we geared up to go and everyone was excited, but not too anxious.

The anxiety did not hit Daniel until we got there. He became overwhelmed with all of the kids, the new expereince, he did not understand why we had to wait, or why they did many of the things that they did. I gave him explanations, but the answers triggered even more questions. Because of this he was almost unable to collect eggs. I knew that he really wanted to and would have been disappointed if he did not participate so I finally told him, “Daniel I will answer all of your questions after you get your eggs. I know you want to get some eggs so let’s try and if you want to stop we will stop” He said, “Ok.” He collected his eggs and was glad he did. Ariel and Joshua took off and had a blast.

They had other things to do such as bouncy houses, a petting zoo, and pictures with the Easter Bunny.

While we were walking to the where those things were Daniel started to talk to me, but I could not understand him because he was talking so fast, but quietly. I got on my knees to be at his level so I could him better and he said, “Mom, I think I got overloaded because I did not know what was happening.” This was the first time that he communicated clearly what had caused him to feel anxious outside of our home environment. He has struggled with being able to express himself unless he is at home. I realized that he was also feeling badly about getting “overloaded,” but was not sure where to direct those negative feelings. It was a moment of understanding for myself too. There have been times and still are times when I am so excited and happy to do something, however; when I have no idea or a vague understanding of what is going to happen my anxious feelings overtake my “happy.”

They can cause me to become so frazzled and confused that the thing I wanted to do is no longer a fun thing, but a scary thing.

Growing up I internalized my feelings of frustration, confusion, and attacked myself with negative talk. I would and sometimes still do, breaking patterns takes time, think things like, Why can’t you just have fun? Why can’t you be like other people and just do it? Why can’t you just go with it? I did not have someone there to combat these negative thoughts, feelings, or to clear up my confusion. Quite honestly, I am not sure I could have communicated it which is why this is even more wonderful for Daniel because he did and that makes it possible to help him understand and rightly place these feelings. I expressed to him how amazing it was that he had the courage to try something new. He was feeling upset with himself so I pointed out all of the positive things that occurred.

I reminded him that most people feel anxious or want to know what is going to happen when they try something new.

He was flustered from the crowd of people and kids and all of the kids running around was overwhelming. I told him that many people feel that way too. Lately, when he has been anxious or overwhelmed I have been telling him that many people feel the same things. I give him examples and remind him that he is not alone, what I have seen is a new acceptance in himself. He is finding a sense of peace when I tell him about my own experiences or share others. I shared with him yesterday too on that grassy field and let him know that what he was feeling was ok and that he was not alone. Then, I asked him if he wanted to go on the bouncy slide and all things were happy again. We ran to the slide, but first made a stop to take a picture with the Easter Bunny.

The kids have never had their picture taken with Santa or the Easter Bunny.

It was another first, Daniel was not really into it and kept asking me, “Can it talk?” But he tried, and he discovered it was not too bad though he has no desire to do it again. :-) The kids had a wonderful time on the bouncy slide, they pet animals, Daniel is normally too afraid to touch or get close to any animals except our cat. He actually pet a bunny and got his face close to little goats! He laughed and smiled at the pigs, horse, and the cow. He stared at them with such a jolly face. Ariel and Joshua were having the time of their life. After it was over, Daniel requested to go somewhere else — he wanted to go to the park so he could swing.

We went to the park for over an hour.

Since it was getting into the late afternoon we asked if the kids wanted to go out to eat, I had not thought ahead for making dinner, Ariel and Joshua were all for it, Daniel was not sure until we suggested Boston’s they have gluten-free pizza. After that he was ready to go get some food. I had hoped that all would go well when we got home, but you never know how all of us will need to decompress. It was a lot yesterday and we were all tired. I suggested a bath for Daniel when we got home because I knew that would help him to have that relaxing time. He stayed in there for a while and came out as happy as could be talking and sharing about our day … asking more questions that had not been asked earlier.

David retreated to his room for quiet time.

Ariel, Joshua, and I cuddled on the couch watching some silly shows. We f\each found our calm. Today is going really well so far too, but sometimes the mind is still processing and may need to bring balance in some way that could be in the form of a shutdown or meltdown and that is ok. We need to feel safe enough to let us decompress. We have never been able to do so much in one day. We have never had an entire day expereince where everyone did fine and we did not need to go home, or go home and have a rough time of it for a while. It was fantastic to have everyone participate. I think it helped Daniel by having him involved in the decision making. We gave him (of course Ariel and Joshua too) the choice to try something or not. He was not pressured into doing anything that he did not want to and he knew that at anytime we could go home. He also, made a lot of choices on his own yesterday with positive outcomes. I have no doubt that this built into his self-esteem. That is our day of pure awesomeness as condensed as I could make it. :-)

I will stop and say Picture TIme!

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Experiencing Autism Acceptance In My Community

The first week of Autism Acceptance/Awareness Month has been incredible. I still use awareness because as much as I experienced autism acceptance this week I also, encountered many people who are unaware of autism. Being aware of something implies that you have an understanding, a sort of working knowledge. Several of the people that I encountered do not have this knowledge and they lacked understanding because autism is simply a word to them, or it is a mystery, a complexity to be figured out, and the representation of heartbroken parents and isolated/hurting children. I gave them a face, a personhood, an experience with a “real life Autistic” who could communicate some of the what’s and why’s about autism. In doing this, I was pleasantly surprised – I received acceptance, encouragement, and validation that I have not had in my physical world outside of family members I am close to.

During the months of February and March, I realized that I was becoming more vocal about autism, in regards to Daniel, Joshua, and myself with people.

I was shocked on several occasions when people started conversations with me that eventually led to a topics such as depression, anxiety, ADHD, sensory processing disorder, learning challenges, which I tend to be able to discuss without any difficulties or fear of rejection, but I found myself openly discussing and sharing our personal experience with autism. I even found myself sharing that I am diagnosed Aspergers. I plan on writing a post about why I have been hesitant in sharing my own diagnosis with people in the next few days, but to get to the root of it I have been afraid of how people would respond — I must be overcoming this fear because I have been telling practically everyone I discuss autism with that I am Autistic too! This is a huge piece of self-acceptance for me and it is helping to build my confidence for my ultimate hope which is to share with several of my family members.

Here are a few circumstances that have filled me with hope.

A couple of weeks ago, a woman from my cycle class and I sparked a conversation that started with her going on vacation, leading into seasonal depression among other things, and eventually led into me sharing about Daniel, Joshua, and myself. This openness led her to share about her sister who has a child with severe autism and a specific type of epilepsy. While I do not know her experience, I can relate, empathize, and share similar experiences – it meant something to both of us to share and have that connection. She was very accepting and though she did not say the words “You don’t seem Autistic” I could feel it. I was not offended – I understand that a vast majority of people have no idea what many Autistics go through or what we learned to do in order to cope with social situations and our environmental surroundings.

Quick interjection: I understand that it is challenging for parents/caregivers/family members/people to comprehend that Autistics who can talk or seem “high-functioning” can compare in any capacity with their loved ones or Autistic individuals in their lives who cannot communicate and are diagnosed as severe Autistics. I understand and I am sympathetic; however, I wish we could bridge this gap and find common ground in order to learn from both sides — all of us becoming more aware of personal experiences leading into acceptance and action.

Back to it!

The more people I have shared with, the more that I understand this. I try to simply explain that I can do very well at masking, mirroring, and mimicking my way when necessary, but that it is exhausting and draining. My other hope is to be able to build these types of relationships in my community so I can express to people how challenging social encounters and our environment can be. I know that many of the things I do to survive in social situations are now automatic coping mechanisms that take over. I do not even think about some of them and at times I feel as though I am having an out-of-body experience. I can see and hear myself, but I have no idea what I am saying or why I am saying something. Some of them are good and others are not – for instance, when I start babbling on and on and end up saying/sharing too much. I can work myself into confusion. I am trying to learn the ones that cause me to go into anxious loops or become overwhelmed — the more I am able to identify them and be mindful the more I am capable of having a positive social experience.

Some of my automatic responses caused me intense anxiety and obsessive looping over conversations.

I’ve noticed that my recovery time and looping have shortened the more that I embrace my identity. This is most likely part of the reason for my new openness and ease of verbal communication. I am experiencing a new ability to speak without my words coming too quickly or becoming too jumbled, confused, and frustrated. However, I also know how fragile I can be, so if I have one perceived negative encounter, I could spiral — I know how to process those moments better now, but it still happens. People have no idea. Many would never consider that while I am talking to them I’m spending a large amount of energy trying to be conscious and combing over every word I say in hopes that I am not misunderstood, inappropriate, not offensive, not monopolizing the conversation, or so odd that I get the “look” … you know the look where someone feels uncomfortable and wants to get away from you as quickly as possible?

I have gained a new awareness of these things – it helps with my own acceptance and ability to help myself. 

By saying new awareness, what I mean is that I had no comprehension, connection with mind and body – true awareness. My mind was working so hard on trying to control/understand my social experience that it struggles enough trying to process/filter/analyze/categorize all the sensory, emotional, physical, and the multitude of other non-verbal input. I do a great job at acting when I am having a good week. On a bad week, I usually do not talk, or I am more focused when I go into social settings. I make sure that I am alone as much as possible. People do not know any of this as they only see the hour or two of Angel at her best. It is when I get home that all of that intensity and processing begin to feel safe enough to unleash inside my brain and body. I have not been able to share things like that with people until this week and it has been received in positive ways. A while ago one of the women at the home school co-op messaged me about a woman who was going through the process of getting her daughter diagnosed for autism. She shared with the woman about me and the woman friended me on facebook.

I waited a few weeks for her to contact me, but she never did.

One day, I decided to reach out her. I had no idea about her views on autism so I explained to her about my family and told her that I was Autistic/Aspergers. I shared with her some of our story and experience with Daniel and I offered to give and share any resources I could with her. I approached her with acceptance whatever her views were, but I also made it clear what mine were about autism. She was receptive — we finally met this week and she was wonderful. Her heart is that of a loving mother who wants to help her daughter, but not only that, she wants to understand. She does not want to fix her daughter – she wants to build upon and work with her strengths. It filled me with hope for her family and as an Autistic. She was accepting of me and was appreciative for all that I shared. All week long I have ended up in conversations with people about autism.

The Autism Awareness campaigns around town have put it on people’s minds and it has given many unexpected opportunities to share.

I have found it interesting that several people have approached me with questions. At the home school co-op on Friday, a woman who I had not expected to have any interest approached me with some questions. We had a very good conversation and she shared that she believes that the little boy she babysits is somewhere on the spectrum. It does seem that way after talking to her and I was able to share with her the possible reasons for his responses. She was thankful for my insights and said that she wanted to “pick my brain” (yeah, I had to get past that visual! It was a good thing I understood that idiom). I did not realize how many of the women there had been watching me interact with Daniel. They have said things to me, which confused me and made me wonder what they meant.

I took some of their comments as hurtful and kind of isolated myself.

However, I noticed that after the first initial interaction, they tried to involve me in their own ways. In a group dynamic, especially with mostly women, they sense when one is going astray and will try to get you involved in the group. It can be a good thing sometimes, if I can overcome my instinctive resistance. :-) I was never aggressive with sharing about our lives, but when they asked me questions, I answered them and combated myths in a way that made them think. I was not sure if it truly made them think, but after Friday I believe it planted some good seeds. I did not dismiss them immediately and I listened to their thoughts – I believe this helped make me feel approachable. No question has ever been “wrong” or too much for me, but I do answer as directly as possible in kindness.

Sometimes I am sure that they wished they had not asked me questions about my “special interest” or maybe they did who knows.

In the midst of questions from the woman, I told her that I was Autistic without any hesitation and I explained to her how the Autistic brain processes differently. I used the visuals that flooded my mind in order to help her try to “see” what it feels like — it seemed to help her a lot. I also expressed how each autistic experience can be very different – though we share many similarities, we cannot all be categorized or thought of in the exact same ways for our needs, strengths, desires, or how we learn, express ourselves etc… On Friday, I actually shared with several people about our autism life. I was able to share with people the diversity of autism within our own household, it helped bring awareness of how different autism is for each individual – many people are still not aware of this.

They do not have a working knowing or consciousness of the vast differences within the Autism Community and Autistic individuals.

This needs to be common knowledge in order to bring about the specific needs for each Autistic child and adult. Interestingly, I have discovered several people who are in my workout groups who have worked with Autistics, are currently working with ASD adults/children, or have friends, family with them in their lives in some capacity. It has been a wonderful experience for me after being so hurt and confused by my experience with people and family (Some Of My Story I …) not talking about it or deeming it as a negative. However, I think one of the most reassuring experiences was at Daniel’s music therapy. A couple of weeks ago, the therapist who owns and operates it and I ended up having a conversation that led into me sharing our life and my personal journey of being an undiagnosed Autistic until a couple of years ago.

I had no idea that our story would be inspiring, but apparently it was and she asked me if I would be willing to be interviewed for a video sharing our story.

I said yes without qualms because I have wanted to get involved in our community in some way, but had not found any place that had common autism values. She also shared that she was going to start an autism school in the next school year that uses the “assume competence approach.” I offered to help in any way possible. They are modeling the school after a school in Arizona that uses neurological music therapy. I will not go into it now, but my soul literally sang with joy when she explained to me their plans. Our community is recognizing the need for change, but many people have no idea what that means or what it looks like.

The challenge with any new paradigm is changing the old ways of thinking.

However, I am up for the challenge and look forward to moving forward in helping parents, caregivers, and especially Autistics in my community. Things are fast moving, but there is a lot to do. As I learn and participate more I will share the happenings. :-)  I plan to help with parent support groups as soon as possible. I hope that with David’s community connections we can help this movement in our community from awareness to acceptance, and reveal better ways to take action. This first week of Autism Acceptance/Awareness Month has boosted my enthusiasm for autism acceptance in my community, and ironically it has also given me a much needed boost in my own autism acceptance.

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Autism Acceptance(Awareness)Day – My Kid’s Perspective

Image found  at Kat's Cafe click image to visit page.

Image found at Kat’s Cafe click image to visit page.

Happy Autism Acceptance Day! That is what we call it in our house. :-)  I found myself entirely too emotional and fatigued to share the post I was planning to so instead I opted to share my children’s thoughts about this day. They do not truly have a thorough understanding of what this day and the month of April means for them — Daniel and Ariel are 9 and Joshua is 7. They are old enough to have feelings, thoughts, and opinions and I believe that it is important to try to cultivate that. I feel that each year and the more that we become socially interactive that it is important that they think about what autism means to them. I want them to have their own opinions and thoughts about Autism Awareness and express how they feel about Autism Acceptance. I came up with a few age appropriate questions to begin this journey of thinking about and processing this day/month.

Here is what they had to say. 

What do you think autism awareness means?

Daniel: It might mean that people should know about autism. 

Ariel: It is about people understanding autism.

Joshua: I don’t know what it means.


What do you think autism acceptance means?

Daniel: It might mean that people will accept autism and accept me.

Ariel: That people accept autism and want to understand.

Joshua: People who accept autism and do not have attitudes about it like some people.


What would you like to tell people about autism?

Daniel: I want to tell them how it works to help them. I like being around people, but I do not like to talk a lot. I lose my words when people get too loud, but I still like them a lot.

Ariel: It is hard sometimes because I get overwhelmed by my brothers, but it is ok because I love them and they are interesting.

Joshua: It’s the same as every other brain, it works the same only we see things differently.


What would be something that is very important to you that you would like to share with people about autism?

Daniel: I like being Autistic because I like the way I think that is important to me.

Ariel: That autism is different for everyone,

Joshua: Being happy and having fun being Autistic, but sometimes I have hard times like forgetting to stop bouncing or being very sensitive to sound and it overloads me. I feel happy about being Autistic because it is a special thing to me.


What do you think would help Autistic people the most? 

Daniel: To laugh, for me it does.

Ariel: If people would understand what it is like to be Autistic.

Joshua: Not having to be fixed like other people say.


What do you like best about being Autistic? Ariel is not officially diagnosed so I asked her, you have many Autistic traits what do you like best about them? 

Daniel: I get to go to music therapy.

Ariel: The way that I understand things quickly, how I see patterns and how everything is colorful and looks like art to me.

Joshua: I like how my brain can create an image of something with Lego’s and I can build it without any instructions, but I do not get all of the details all of the time.

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I Love My Birthday … Well, I Used To Much More

Today is my birthday! I am 41 years-old and I love getting older. After a life of confusion, frustration, so many traumatic experiences … etc. and so forth to be able to celebrate the day of my birth and finally, understand why I am the way I am as well as be able to accept me is a great thing to celebrate. (Long sentence, huh?) I wrote a post in 2011 giving the reasons why my birthday means so much to me you can read it here What’s In A Birthday? It is not frivolous nor does it have anything to do with being a “diva” for the day. I am genuinely thankful to have a birthday because I was a child who was almost aborted. I share some of the story in that post above. However, I will not discuss abortion views or opinions so please do not comment on that.

I cannot say exactly why I am here or why it had to take this long to actually feel like I have value enough to share air with the rest of world, but I am here.

Prism ~ Artist Helene Kippert

Prism ~ Artist Helene Kippert

I am here, and I have been thinking a lot about how long I have kept quiet and even discovered that I have been overcome with shame about who I am. I love my birthday, I enjoy the day and I am not going to lie I love presents. I don’t care what they are I just enjoy getting them and unwrapping them. However, for the past few years a steading foreboding has begun to shadow my joyous day and it is Autism Awareness month.

March and April used to be two of my favorite months, they are being swallowed with the approach of fundraising and constant “panic” about Autism.

Not only does it stir up some intense emotions about autism and how it is viewed in our society, but it stirs dread. It creates a battle within myself of feeling happiness for my newfound acceptance and understanding for myself and it unravels my triggers of being misunderstood and condemned for being different. The added components of my own children being misunderstood, spoken of as a “tragedy and a burden” layers on new emotions that make me so sad and sometimes defeated. I am determined though, to not allow this to overcome me.

Today is my birthday and I will enjoy it!

In a couple of days Autism Awareness Month will be here, that is the last time I call it that because it should be Autism Acceptance a call to action for the world to learn, understand, accept, and move forward in educating everyone on how to help Autistics and their families. I plan on writing the month of April on several topics in regards to Autism Awareness month. I am not exactly sure what I will share, but I do plan on taking the month back and focusing on staying positive and not allowing ignorance, campaigns for organizations to get more money, or the lack of true action and help for Autistic families. I plan to look at what I read and see with positive and hopeful eyes. We’ll see how it goes. :-) I said, this on facebook the other day “I think I may turn it on “rainbow” or light it up “kaleidoscopic” for the month of April.”

Maybe if many people looked at Autism through a prism instead of blue they would see a lot more positive too. 

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“Just Be My Friend” IIII

Continued from “Just Be My Friend” III AND the final post from this series. :-)

Upon many, many, MANY, conversations we came to terms with how each of us brought in our unhealthy learned coping mechanisms as well as ones that we adapted throughout the years based upon faulty beliefs, fear of rejection, pains from failed relationships, so on and so on. Our journey has been hardcore soul searching. We initially did not give up on each other for the sake of our children. We desperately wanted to break the cycles that run through each of our families from relationships to lack of transparency and unhealthy coping mechanisms — the biggest one of all abandonment, physical and emotional. Our purpose was to give our children a better way, something positive and most of all fill them with a sense of stability. We want them to know that they were greatly loved when they are adults. (Of course, now as well.)

When we took on each situation and listened to each other without consequence, things started to change in our communication.

We still have days where we get irritated or frustrated because we experience miscommunication and things can get contorted requiring us to take a break. However, David finally understands my need for quiet — he may forget, but instead of shutting down or trying to engage when I know that it will cause me to become overwhelmed I simply say, “I cannot talk anymore,  this is too much talking I need a break or I cannot process this right now.” If I have hurt his feelings for the way I said something or my tone seems to not match he tells me and gives me the opportunity to explain. We try not to assume or infer anything. We are both trying to be more empathetic toward each other, open, and losing any assumptions. It takes a lot more effort, but it must be done to help with social confusion and needless hurt, and frustration because of how we communicate differently.

We are a building a relationship as friends.

We are partners without the attachment of spouse for my sake. David has sacrificed for me in certain ways and I have for him in certain ways. It was not like that before no one is truly to blame. Some days are less balanced and one of us will take on a larger load, but it ends up equal at some point. Some days David wants so much to hold me and comfort me. That is the last thing I want and the other day when he was trying to comfort me in his way, I told him, “Just pretend I am wrapped in glass.” I feel as though if he touches me when I am struggling or working through something that I will break into a million pieces — it hurts. I find it insensitive as well when he tries to comfort me in his way or tries to make me talk when I cannot. I have to remind him that it feels violating and not loving at all to me. Then, there are days when he desperately needs some sort of touch and I push myself to give a hug, a pat on the back, or a simple gesture on his hand. However, some days I cannot and he has to work through his own feelings of thinking that I am insensitive and unloving.

He appreciates when I do reach out like that though because he knows how difficult it is for me not only to remember, but because of my sensory sensitivities.

When two deeply hurt, confused, and misinformed people no matter what their IQ or emotional intelligence come together their “fight or flight” responses can take over — loss of love, relationship, and fear of rejection/abandonment are huge threats in the minds of many humans AND that can be scarier than any starving lion ready to pounce. (I am on a lion kick.) Additional difficulties such as sensory sensitives, PTSD, C-PTSD, anxiety, and depression can add layers of pain when one or both partners are not aware or have no understanding. (PTSD and Relationships) Heartbreak is a terrible pain; feelings of being misunderstood no matter how hard you try are devastating. Isolation can strip ones hope to virtually nothing -– to feel isolated when surrounded by those who claim to love and care about you is confusing and a pain that I cannot put into words.

Throughout my life my trust has been manipulated, used against me, set me up for abuse and being bullied.

With David I found that through the years when I felt so alone and unheard about Daniel that I took a lot of my trust away from him. When I tried to communicate about discovering that I was Autistic too and he was aloof and disinterested. When I shared what I had read and asked him to read about women and Aspergers he did not have the time and I felt like he did not care. I took more trust away from him. It made me feel invisible and that my identity was of no value after discovering a major component of my identity for the first time in my life. The more certain cycles persisted year after year, a little more of my trust in him was tucked away. It was only a while ago that I realized that I came into this relationship not trusting him anyway.

The red flags I felt in the beginning made me keep up walls.

The more that I felt that he abandoned me, did not protect me, help me, or want to understand Autism, I took more and more trust away. I had the perplexed feelings of not “feeling” love and not understanding why I felt so much loss of trust with him. I had expected to feel “love” in the same way for him at some point as when I experienced what I thought was love prior to meeting David. I had the expectation of one day feeling the love that other people talk about in that romantic sense, it’s different for me, but when it never happened that way I felt like a failure. I thought something was wrong with me. No matter what I did, it was the same thing that I have felt in all of my relationships there is no intense passionate love bursting from me.

Although with David, I did have a major difference.

Despite all of the trust I took away and the fact that I came into the relationship lacking a foundation of trust, he has been the only person that I did not feel a constant fear or as if my heart was continually breaking. For the most part, our 10 and half year relationship has kept me at a steady peace. I was not fearful of losing him. I was not fearful of him cheating on me. I was not fearful of him lying to me or abusing in me in ways that had been done to me in the past. However, I felt as though I was failing because I could not be the wife that “felt” love in the same way he felt for me. Being in a constant state of feeling as though something was wrong with me or that I was a failure as a wife trickled into my feelings for him as well. I saw the good that David did do, but it was quickly swallowed away every time I felt ignored, criticized, unheard, and dismissed.

It caused me to walk on eggshells and be fearful of his words.

Later, my fears became heightened by his actions because I started to live in a constant PTSD trigger state with him. He had no idea and when I shared this with him it was heartbreaking. He prided himself on being so different from my past relationships that when he saw similarities, how his words came across, and learned that I didn’t even think he liked me as a person any longer it was beyond painful. He had no idea and wanted to change. We both did. David and I can have challenging personalities to live with. We are not people who freely give access to our trust. David came into this relationship with his own trust issues, fears, and pains that filtered how he perceived me and my actions. By breaking these barriers with both of us we found a place to build on something true.

We still have more work, we always will.

Some relationships take more work than others, especially when dealing with people who have been traumatized throughout their life by relationships. So we are building a strong friendship to let it grow into a better marriage. Possibly the negative associations will dwindle the more he and I establish how we define marriage for us. Possibly when I think of the word marriage all of the expectations real or perceived will no longer feel like huge concrete blocks weighing me down. There is a chance that I may feel loved by him, but I do not put much stock in “feeling” love it can flee as quickly as it comes. I base my relationships on stability, balance, the freedom to communicate without being attacked for what I say or how I say it, and embracing the strengths/weakness to enrich the relationship. I want this in all of my relationships, but that won’t happen so I will keep it to the minimum that I have and feel safe with.

I do hope to be able to speak his love language and vice versa without so much thought, energy, and work.

Until then we are satisfied with taking it day by day creating beauty in friendship. We are learning what it means to dismantle unhealthy thoughts, patterns, and coping mechanisms in our relationship. We feel strongly that it will continue to flow over in all of our relationships, but the most important thing for us is that our children learn to love themselves and see the positive in the work it takes to cultivate solid relationships. I wish I would have learned what trust meant, what abuse was, how people manipulate in destructive ways, how to know myself and trust myself. I wish I would have learned many things and I wish I would have known that it was ok not to do or be the way everyone else was, but I didn’t. So now I know much more than I had before and I move forward, thankfully with a partner who is willing to grow, change, and do the hard work with me fully accepting and trying very much to understand; as I am with him.

We are friends and that makes me feel safe.

I have been reading a great site that has been helping me process some of the spiritual abuse I encountered while in church and with family, but it has given me more insight into people with character disturbance. This particular article came out while I was working on this post People with Character Disturbance: Openness vs. Awareness.

This excerpt struck me and made me ponder how David handled all of this. 

“The lack of openness in disturbed characters is rooted primarily in their arrogance (i.e. their “I understand your way but I think my way is superior” stance) as opposed to their ignorance (i.e. “I simply don’t know any other way”). Another reason for their lack of openness has to do with their preference. Most of the time, the ways they’ve come to look on things, think about things, and especially to conduct their affairs are compatible with various traits in their personality. They may have even tried out alternatives but found the ways they eventually adopted a more comfortable, easy “fit”, especially with respect to their self-image, and, therefore, preferable. And because they preferred these ways, they quickly became habitual and, in time, ingrained. Finally, the disturbed character’s lack of receptiveness has to do with their core beliefs and the values they hold. Now, many are quick to assert that disturbed, and especially disordered characters simply have no values. But this is untrue. They do indeed have values, as well as a hierarchy of importance they attach to those values. What you have to remember, however, is that the values they hold are often significantly different from the values most others might like them to embrace.”

For quite some time I could have said these things about David.

Interestingly, he had no idea that he had been lacking openness with me. He talked all the time — he talked at me, but he was not sharing anything from his heart. He had adopted certain ways of dealing with people, situations, and for the longest time gave the perception that he did not struggle with issues that others had, mainly me. He was and still can be much attached to his values as am I, but now we are able to process through things with more awareness and understanding which, leads to empathy and compassion. Ultimately, allowing us to trust one another again. When I shifted out of my fearful foreboding I watched, waited, gently spoke about things exposing more and more of my unhealthy ways of thinking and responses. Then, I would ask him if I could share with him my perspective about some of his. I did not treat him with disrespect or blame him. I did not make him feel badly about himself, and I did not condemn him.

I was not confrontational or demeaning.

I shared with him in kindness and with the heart of wanting to create a healthy relationship. I made sure to tell him all of the positive things that he has done and about his great qualities as I laid everything out. Had I done this two or more years ago I am certain the outcome would not have been a positive one. Neither one of us were in a place to be open and face the very difficult things that we have had to face. For the time being, we have learned a great deal about ourselves, each other, relationships, and how to communicate — we will continue on this path creating something we have never seen or experienced before. I suppose, I would call that true love. ;-)

I do not think all that I share is uncommon in many marriages/relationships.

I think if people took a long hard look at their own relationships they would see that their challenges are not much different. I do know that we have additional obstacles due to multiple factors from our upbringing to our current life. But I would like to make a strong point that marriage and relationships are unique to each person, but challenges or difficulties with reading people, showing affection, communication, finding balance, working together, etc … are not exclusive “problems” for Autistic individuals. Some things may come easier or be more difficult for others, but that is true with every person. I am rather tired of reading articles that make it sound as though Autistics are the problem or the ones who need to change.

The reality is it takes all parties and each person needs to be willing otherwise it is nothing more than a one-sided relationship. 

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“Just Be My Friend” III

Continued from “Just Be My Friend” II …

Random thoughts here before I go into the next post, I am not sure how many people understand what I am expressing in these posts. I am not sure if anyone has felt to the same degree of disdain, confusion, fears, and longings toward relationships or not. When it comes to “marriage” it is not really toward the idea of a relationship it has to do with the word and how that word is a trigger for me it makes my mind and body feel shackled with unrealistic ideology and expectations –- anxieties about never being able to have a “normal” relationship. I am not negative toward anyone’s happy relationship — I actually think it is a great thing to read about positive relationships. I want that for my kids, I never want them to experience the types of traumas and pains that I have associated with relationships that includes all relationships. In recent months, I have found that not worrying about it so much and just being is making it much easier. I still have anxiety and panic, but they leave soon enough.

By David and I working toward redefining what marriage is to us and how we would like to live it out has given me a new confidence — it really is ok to be different! 

Things are much more positive for me in the friendship department. I have several women who I connect with online who wonderful. We may not interact every day, but we do communicate. I feel that they are strong women who radiate a healthy perspective and balance for their family and themselves. I find it a great pleasure to communicate with other women who are intelligent, make me think, and allow me to share without condemning or judging me. I have not had that in my life so it is a great experience. My life was full of few women friends who only wanted me in their life when they needed something, guy friends, or I was secluded with one boyfriend/spouse. Being online for several years now, I have made friendships that may be considered acquaintances, but I would still help them in any way I could and I try to show my support by reading and “liking” their posts or fb posts. I comment when I have the time too. I have been making several friends in my personal life too and many of them I have come right out telling them that I am Autistic/Aspergers. It has been a great experience so far.

As I share, I admit I still struggle — I wait for the negative to come and I anticipate the sudden anxiety to strike when I least expect it. 

I continue to wonder if I am the only one who struggles with these things I share in the relationship department. There have been several times that I read posts or thoughts from people who make general claims about those who are Autistic when it comes to relationships. I personally do not feel that it would be responsible of me to do that. I feel that my experience is mine alone, we can share, empathize to the degree of actually feeling as though we have experienced it, have similar feelings and responses, but I will not claim that all people are like me or experience anything in the “exact” same ways. I look at each person as an individual with individual gifts — no greater, no less. How we work through our journey is unique and valid. I had to deal with my own inconsistencies in these beliefs when it came to David – I was not fully accepting or compassionate toward him when it came to his journey because of my own pain. It seems that both of us were operating that way because he too holds strongly to such beliefs toward others.

Onto the original thoughts that go with this post.

We did spend much time talking about and processing many of my struggles. We still do when I am triggered or bombarded with sensory sensitivities, anxiety, and /or PTSD in turn it has benefitted David. I am not one to keep quiet with people I am close to, but I did for a long time. I stuffed my fears, my pain, my resentment, my anger, and my disillusionment and so did David. We mourned what we thought we had, and there was a season when we were not sure it was best for us to stay together. We considered divorce and guess what, this had nothing to do with our Autistic child or my Autistic self. Yes, those factors contributed a lot of stress sometimes, but the reason for our marriage reaching this place had to do with that fact that we did not know what a healthy relationship was and we did not know how to communicate to each other.

We had assumed that we “knew” each other; in reality we had not established a relationship.

We had one, but because of those other factors it was not as strong or balanced as we presumed for so many years. It was founded on our unspoken expectations and ideals that we brought in thinking that the other understood. David’s stress and pressure from trying to keep us financially afloat was too much for him. He didn’t talk about it. His denial about Autism, trying to grasp me being Autistic, and the multiple other things that he was wading through on his own had caused him to be angry and in a constant state of tension. A major issue here was that David had isolated himself completely. He is now a big part of the community and establishing some great things for the future here. He has made some good friends and this has helped him a great deal to have men to talk to. I am excited to see what all transpires and at some point I can’t wait to see my role in it. More social for me, eek! I digress. His constant state filled with his own anxieties, fears, tension, frustrations etc… influenced me and triggered me often.

I became afraid and confused by/of him.

His words were ever-changing and inconsistent, yet he would claim that I misunderstood him. I eventually started recording him or writing down everything he said to confirm that I indeed was not crazy. I reached out to people and family to talk about what was happening to regain my sanity. I read as much as I could about how my past of abuse, being undiagnosed Aspergers, PTSD, anxiety, depression until a couple of years ago affected me in my current state, and I shared with trusted people (such as my psychologist, I have not needed to see her for over 6 months now) when I could not make sense of what my mind was saying or the emotions I was feeling -– not for them to tell me what to think, but to help me process. I made a plan to help me do what I needed to do in order to build myself up and regain independence that I had given up. It helped me to build up my voice and confidence then, one day something happened -– I was able to speak up for myself.

Side note: When I realize that something is making me fearful, it does something to me and ignites a “warrior” type of feel.

I am not a fearful person, I cannot think of much that truly scares me (Unless it has to do with my kids that is a different type of fear, I am not going to break down the fears here.) because when it does I go after that thing like a hungry lion. I do not know why I do this, I believe it could be because no one was ever there to protect me. When I had night terrors as a child my mom did not comfort me. When I had scary dreams I was not allowed to wake her or come to her. I had to comfort myself, for many things. I had to face bullies alone, I had to face my abusers alone and I did; though phantom lingering fears and anxieties have stayed with me my entire life. I have found that what I do find the most fearful is the “unknown.” Even still when I find that I am afraid of it I press through until the fear subsides. My mom had no understanding of how frightening and panic inducing night terrors/nightmares were even though she heard my screams.

She felt that bad dreams were no big deal, you just go back to sleep.

Um… not that easy especially, when you are a little child. I do not want to make my mom out to sound horrible, but she was not the comforting type. I am very distracted today forgive me … Because I had realized that I was afraid of David’s responses, words, and actions I became aggressive in my attitude toward him when I felt he was being mean or making inappropriate jokes that hurt me. It escalated up to that event which, in hindsight is good because it allowed me to tell him point blank “I am terrified of you.” He was devastated, it truly crushed his heart. Figuratively. He had no idea. Once I reach the point of “attacking” my fears especially in relationships, normally any threats of someone leaving, withholding emotions or information do not matter to me. I am done with the pain and the consequences are no longer as valuable as they once were. (There is only one person who can continue to induce these fears in me and trigger them in an instant, my dad. I do not know why and on some days I am not affected at all on other days it can knock me to the floor into a sobbing mess.??)

I wish I could be “done” with anxiety and PTSD, everyday gets better and better so I will embrace that.

Since I was able to speak up and tell David what I was feeling it opened the door over the course of time to share with him what I had analyzed about him and our relationship. He felt horrible. I did not intend for that, but I had to express what I was feeling and going through. I needed him to understand and I needed to understand him. We had to trust the process if we were going to have any sort of relationship together or not with each other because no matter what we have children together. When I felt it was appropriate, I was not in an emotional state and he was open, I confided in him the traits that I had observed he had picked up from his upbringing to protect himself. They manifested through manipulative/narcissistic traits. I told him straight out about those behaviors and how they triggered me. Also, after I had spent quite some time analyzing our relationship from the beginning I shared the red flags of our relationship that shared those traits.

This is where David’s character really shines.

It was hard, painful, upsetting, and yes, there was a bit of anger and denial at first, but he is the type of person who will take in the information and process it. If he does not agree he will say so and will give his reasons as to why, I respect that. We work together and give the freedom to share openly, we allow each other to process, and understand that there may be emotional responses, but we try not to react to them. We are learning mutual respect, openness, validation of feelings, expression, time, and giving the person freedom to process in their own way. He is just as determined as I am to become a better person and work together in order to establish a strong relationship and change those things that have been so ingrained in us that work against that. The last post coming soon wraps all of this up, I hope.  :-) These posts are to help me solidify all that I have been working through. I am not sure how people may perceive them, but my hope is that people can understand and possibly by sharing my experience it helps others. This has been a challenging one to write, but I think it is worth it. I appreciate very much those of you who read and go through these posts with me, thank you!     

A couple things that I wanted to share.

I just watched this today, it seems to go right along with my instincts of going after my fears.
Chris Hadfield: What I learned from going blind in space

I may have shared this before, but I still think it is a good resource to share.
Toxic Relationships: A Health Hazard

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“Just Be My Friend” II

Continued from “Just Be My Friend” I

As for David, he was incredibly vulnerable too. His vulnerability manifested differently than mine. I found him abrasive and confusing. He was mentally drained and exhausted, it was his last year of graduate school and he was trying to heal from his own failed relationships. For several years, his world was nothing but academics and living in a research lab, writing articles and preparing his thesis. During that time he divorced, had several relationships and fell into a relationship by circumstance that left him scarred and even more distrusting than he already was – she did a similar thing to him that one of my ex’s did to me. She came home one day and told him to move out, they were finished, she had found someone else. Short version, when I met him he had felt he reached rock bottom and went to all that he knew – church.

He had exhausted all efforts on his own to pull through depression and isolation.

Our vulnerabilities and lifelong confusions, pains, triggers, etc … from every type of relationship was a formula for a not so healthy relationship. I have written about our relationship from the beginning (I shared the links in the last post) and now that I have more insights it gives an interesting perspective about many of the events that took place. Do I think we were a mistake? No, never. We created three incredible humans with our gene pool. Here is what I do think, we moved too quickly. I did not have time to think. I saw him once and the next thing I knew he was driving my car picking me up from work every day and hanging out at my apartment while I was gone to work or leadership meetings. The second time we hung out with each other he pressured me for a hug and I felt guilt for not wanting to hug. There were specific words used that made feel like I had to. There are other things that I am not going to go into, but I had gut reactions toward them and I wish I would have been able to speak up then.

Those can be red flags.

Do I think he was purposely manipulating me, a little yes he has admitted as much, but it was not for the purpose of controlling me or trying to own me – I know that now after doing intense research about narcissism, manipulating people, relationships, and Aspergers relationships. In 2011, I started to dissect me, pulling off layer after layer trying to understand myself after that I did the same thing with David. I will interject here, though I do share in more detail in the next post, I documented everything with David. I had to write down what he was saying, I recorded our conversations without his knowledge, (he knows now) I wrote everything that I was feeling after talking to him, I wrote out what I said to him because he confused me so much that I could no longer talk to him without feeling overwhelmed and in distress/mental chaos. I had to do those things to protect my mental state and help me work through what was happening.

Mentally, I had been so drained from no breaks from the children, constant PTSD triggers, anxiety, depression, and being physically ill that all of my energy went into being as stable as possible for my kids.

Back to my topic, while doing that I dissected our relationship and I will tell you there was a time that I was concerned that I was in a relationship with a narcissist. We were married within a few months of meeting. Then, we packed up and moved across country where I had no family or friends and I really did not want to go, but I felt a strong pull. All of my social connections were basically cut off. David struggled staying at jobs, he had so many ideas and many times he was telling me about his next “big thing” and we would find ourselves without income among other things. Like I said, David does have a big personality, people love him or hate him. He is very charismatic and convincing. He can be hard to get to know, both of us can be, but when you can get through the rough outer shell there is a very kind and compassionate person. However, when he feels that you have hurt him in anyway his harshness can be excruciating. He can argue anything and make your mind turn into a whirlwind of information. There are many things that could make a person believe that these were the traits of a narcissist. I got to the point where I could no longer identify myself.

I became terrified of him and afraid of his actions.

He never physically harmed me, but with my past any sort of aggressive energy was interpreted as a threat. There are many details that play into that some of them have to do with my triggers and PTSD, others have to do with his lack of understanding how serious my depression, anxiety, and triggers were. He also, did not know anything about PTSD or how his words and actions could set me off in so many ways. Either did I. He did not understand how actions and words affected me, I did not truly understand either or how It affected Daniel in similar ways. (All of our kids really.) Daniel fed off of my energy as well; it was a horrible cycle for a long time – partly do to David and I both being unable to understand or communicate our emotions. I became very distrustful of David when he was in denial of Daniel being Autistic. The more I felt he abandoned Daniel and myself the more I didn’t trust him, the more my triggers were easily set off, the more fearful I became.

I had no idea that this was happening. 

Because David is much more socially adaptable and has the ability to communicate ideas and cast vision within large groups and small groups, it made me feel as though I was inferior to him. He still seems to fall somewhere on the Autism spectrum – no official diagnosis, but based upon what I have read about many “nuerotypical” woman in marriages with Aspergers men David seems to fit along those guidelines. I say that we are “Opposite Aspies.” This particular dissection of our relationship has taken about  two years, I had to first see and understand for myself these things while processing past relationships that were actually seriously abusive then, I had to filter through what my brain was perceiving. I needed to know what was actually happening. Was I in an abusive relationship? I have not had a single healthy relationship and many of the relationships I have been exposed to or continue to be exposed are unhealthy and co-dependent some appear to be great and wonderful marriages, but when talking to either party you can discover quickly the masked over dysfunctions.

In my family religion and spirituality hides a lot and covers the veil of manipulation and dysfunction – I will not go into that. 

I needed to know if David was doing things on purpose. Was our whole relationship a sham? All of it came down to me making the decision to learn how to express myself. I needed to face my fears and accept whatever happened. I needed to build trust in myself, find my voice, and believe that I was fully capable of being self-reliant, again. I had to learn how to express and make clear boundaries. I needed to make it clear that I needed support, tell him what hurt me, scared me, and triggered me. I had to find ways to communicate when I lost my words or shutdown from being triggered. I had to learn about what I was feeling, what it meant, why did I feel sick when he said certain things to me. Why did I feel scared when he responded or did particular actions? Why did I get so angry when he spoke to me in a certain tone? What did his facial expressions mean and why did I think that he hated me? I had to trust the process for myself and find ways to communicate these things to him. (This is a process that both of us will continue to work on throughout our relationship.)

The first thing I did was work on helping him see and accept that I needed to heal and work through my past.

I had to express to him that it was vital for me to have a safe environment if I was going to face my triggers and PTSD. I cannot recall exactly when, but at some point between 2011 and 2012 I asked David to just be my friend. I did not know it then, but the relationship of husband and wife was too overwhelming to me, I still struggle with it. We are still maintaining building a friendship relationship, some days are easier for him then others. I don’t want to hug or touch. I don’t want to say I love you, but I am trying to learn his love language as he is trying to learn mine. It is hard! I have had the spousal roles so jumbled and confused. I fear marriage. I fear relationships. Before we even entered into a relationship I was already overwhelmed with “unsafe” feelings subconsciously. I actually told David at some point to stop saying that we were married. Marriage is a negative thing for me. It does not represent joy and love. It represents people treating you like crap, taking advantage of you, cheating on you, manipulation, control, there is nothing sanctifying about it to me.

The only reason I ever got married was because I thought that was what I supposed to do.

My family said it, church said it, society said it, it seemed like everyone said this is what you do to be “normal” no matter how much you may not want to you have to in order to have the “right” relationship. My views of marriage and romantic relationships have been mutilated from seeing unhealthy marriages stay together and the multiplex of divorces/marriages/failed relationships throughout my family history. My mind and heart have been so filled with confusion, pain, and repeated abandonment from romantic relationships that if I had the continued expectations of a marriage real or perceived, it would not allow me to get through the next step on my healing journey. I know that I hurt David when I asked him that, but I had to. In order for my healing to manifest and any sort of trust to be established I needed a friend, not a husband. It triggered so much confusion and feelings of failure/inadequacy in me. We hurt each other a lot over the last few years.

However, the reasons for this was because we had no idea how to communicate or understand one another – we did not learn to communicate in life, we learned to leave and/or isolate.

In the next post, I share more about how we worked through and handled our pain from being so open and honest with one another. I talk more about how I approached David in regards to being afraid of him and exposing our unhealthy patterns in relationships.

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“Just Be My Friend” I

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

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

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

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

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

And now onto the first post …

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Pressing Through Anxiety

Last week, I pressed through a lot of anxiety. Being undiagnosed with Asperger’s and anxiety until a couple of years ago, I really did not think about anxiety growing — it was always there and felt “normal” to me, but I did have a knowledge that many people did not feel or respond in the ways that I did. I had panic attacks and anxiety my whole life. As a child, my mother would get so frustrated with me because I was so social and seemed to be at ease interacting with others, but I would start getting stomach aches, sudden fears, loose my words, start to cry, all sorts of manifestations before or after social events. However, the manifestations did not occur for similar situations. One day I would be in a panic about going to school and having to talk to people, but I had no qualms about getting in front of people and dancing. 

One day, I could walk into a room and talk to everyone without any issues. 

Then, on the way home start acting out or get a stomach ache and emotional. I had stomach aches a lot. Anxiety ripples fear throughout me and makes me emotional. In my emotional state I begin to loop. My loop can manifest on anything – it is solely based on whatever has triggered me for the day. It may mean absolutely nothing to me, but I cannot let it go such as when someone posts a quote from a famous person and I question whether or not the person actually said it. I will spend hours in search of finding the direct quote just to satisfy my curiosity. However, it really does not matter to me, BUT I MUST know. My mind needs that stimulation, say “information” drug release to help calm my anxiety.

That is how I have coped with my anxiety throughout my life – when I was younger I went to encyclopedias and dictionaries. 

Now I have the internet. I also, go through some unhealthy ventures where I get fixated on facebook, looking at images, reading posts, making connections, coming up with questions, analyzing how people comment on certain posts, but comment differently on others. There are no people set apart, it is group collection of people’s voices that I observe and wonder what made them reply like that? For instance, on Huffington Post there is a huge gamut of responses for any given article some can be downright awful and trollish while, others are thoughtful and mindful. Then, there are those who reply who I do not believe read the article at all. Ordinarily, I spend little time on such things for some reason my mind has picked up this way of processing to sooth me at times. Probably protection, anxiety induces my social fears so I am most likely trying to “read” and “understand” people to seek out patterns and think, MAYBE this time I can protect myself — I am sure that plays a key role.

This particular soothing method is actually more harmful for me. 

It instigates even more anxiety and begins to fuel depressive thoughts, being on facebook at certain moments of an anxiety loop will spiral me into feelings of failure, shame, inadequacies, and as though I am invisible. I DO NOT feel this way in my typical state of mind. Over the course, of six months I think it is, I have changed many ways of coping with my anxieties. I had to force myself to walk away from the computer, even to the point of forcing myself to watch something on TV (which I am not a huge fan of doing, it can make me feel unproductive, that is only how I feel for me.)  because it is far better than, social media. I can pop on Sherlock or a documentary to help bring me calm. I remind myself that the anxiety will pass, and I also remind myself of my track record of making it through them. I have made it through panic attacks, anxiety attacks, and anxiety loops 100% of the time.


I am in an anxious state at the moment; there are various factors at play such as the sudden weather changes inducing my sinus issues and vertigo spells. I have not had horrible spells, but enough to throw me off a little. It messes with my already sensitive sensory processing system. However, I feel great. I am in a good mood, I feel silly and jolly. At times, anxiety feels like a hand gripping at my ankles trying to drag me out of my “walking on sunshine” state into a spinning bottomless pit. If I feed my unproductive mind-numbing coping mechanisms then, I do fall into that pit and it can take me weeks to pull out of the depressive thoughts and foreboding. The last week was rough to say the least, but it was extremely positive too. When I feel I cannot bring any balance or help for situations my anxiety starts to bombard me.

I did several new things this week that had lingering anxiety attached. 

I found sort of a workout partner and she and I hit it off really well. I went into the gym at the Y for the first time and tried new things in there. I talked to a lot more people than, I have EVER for the last year and half going to the Y. I have no worries about being myself as a matter-of-fact being awkward or analyzing every word I was about to speak did not happen. Don’t get me wrong, I was totally awkward and said all sorts of strange things, however; this has always been my shtick. I do not do it on purpose it just happens I say inappropriate things or what seems silly and people laugh. I have had negative situations because of this, but in this environment the people are very accepting because there are so many personality types — a feel of open-mindedness makes a big difference in how comfortable I feel.

Social anxiety did not hit me in an intense overwhelming way until after I left there Wednesday morning. 

The anxiety rose, the fear consumed me, and the tears started to come. The cloud of depressive thoughts came with the question did I do something wrong? Oh, God!! I don’t know!!! I came home and decided to write some of my thoughts on facebook and I am glad I did because it helped me a great deal to hear from others and seeing “likes” was comforting. Then, I got off of facebook because I had to get school going and stay focused. That was good too. I find that my anxiety rises when I do not have direction. Like today, I really have no set schedule and I feel a little lost. I have a ton to do. I need to clean, do laundry, finish up late lessons with the kids, prepare for tomorrows lessons, and figure out what I am making for dinner, so on and so on … I cannot get focused. I am anxious.

Hello, that is why I am writing!

I hope this will help my mind find calm in a productive way — I hope. :-) I pressed through those anxious thoughts with flying colors and went about my week meeting people, talking to people, being social on facebook etc … I was doing really well, but I was getting physically drained. By Friday after my workouts, I was ready to go home and gear up for Ariel’s home school co-op. They were having a luncheon which meant changes. Many people, many smells, art show, strings playing, and talking to people. I had those thoughts on the back burner when I went out to my car to discover that someone had hit it and broke the front light leaving a sizable dent. I nearly screamed in panic. 

My first thought was to get in the car and get home to safety. 

I stood there fighting with myself, I was telling myself to get home. You have to get home now!!! And the other part of me was saying take a picture and go back inside. I went back inside and said someone had hit my car, thankfully the person left their information for me at the desk and we can get it resolved. When I went in I said to my aunt, just when we start to get a little break something like this happens. She said, “Well their insurance will cover it so you will be fine.” I wasn’t referring to that I was referring to all that it is going to take in disrupting our household schedule to get the car fixed. We cannot just say, oh well the car needs fixed and go get it done. We have to plan; now I needed to explain in great detail to Daniel how the car got broken.

Now I needed to ease his mind and reassure him that no, the car will not get hit every time we drive it or if it is in a parking lot. 

I was thinking of how we needed to adjust our schedule to get it fixed and that filled me with anxiety. Ariel’s state testing is next week — anxiety. We are meeting Daniel’s special Ed teacher next too — anxiety. David is going out of town next Sunday for several days for work — anxiety. My morning schedule will change while he is gone — anxiety. I don’t want anxiety. I do not want to spiral just because someone accidentally hit my car, but I do. I do not want to be overcome with anxiety because I am making friends or talking to people, but I do. I do not want to go into a state of anxiety because my schedule changes, but I do. And I press through it and it is exhausting! Because I knew how much my mind was feeling this I allowed myself to rest when fatigue came upon me. Last night I knew I needed a break from the computer and I decided to rest my brain and body with shows like Brain Games and I watched several other documentaries. It helped a lot, although this morning I found myself feeling the anxious scratches gnawing at my chest and heart.

I went on facebook, forced myself off — went back on again, and got refocused chatting with a friend. 

Then, Ariel needed me and I found myself rethinking my anxious feelings. They are not gone, they are still here as I type, but I am not responding emotionally out of them. I feel on edge and that any moment, like the unexpectedness of the car being hit, could send me — it does not have to. I was able to come through that among the many other anxiety inducing situations I went through this week and still function well. I have been able to function well, now that is HUGE progress for me! It took listening to my body, remembering negative patterns, stopping them, and accepting the unexpected, but once again I made it. I will make it this coming week, and I will most likely be fatigued, socially hung-over, and exhausted — I always feel better and I am usually very happy that pressed on. For the moment, I feel much better, calm is easing its way into my mind and I think writing this all out has helped.

Thank you for reading! Please share any thoughts or insights you have I would love to hear them! (But give me a few days to comment back because you know anxiety and all. Ha ha ha) ;-) 

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