I Don’t Have A “Bestie”

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

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

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

It triggered my painful experiences with friendships.

Continued ... I Don’t Have A “Bestie”

Cultivating My Own Support Network

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

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

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

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

Continued ... Cultivating My Own Support Network

Holiday Happiness

First of all I want to say Happy Holidays and I hope everyone is having a wonderful holiday! I know that it can be difficult for some, this year happens to be one of the better holiday seasons that I have had. For those of you who need some love and hugs here you go.

I used this image because Daniel liked it best. :-)

I found myself pleasantly surprised at how jolly I was feelings…

I even found myself not being as depressed and anxious as I normally seem to be – when I think of holidays dread normally comes to mind. Yesterday, I was doing very well too. I went to work out early in the morning, had to make a trip to the store which, turned out to be nice and quiet. It was mostly full of men and I found it interesting that the wild rampage buzz that has been around for weeks was not there at all. I actually got into a conversation at the check-out and left Wal-Mart all smiles. All smiles! Yes, it was a Christmas miracle. However, later in the afternoon social confusion took a toll and many triggers were set off. I will not go into detail, but basically it was triggered by someone either trying to make me feel guilty or it was their own guilt.

I could not discern because despite how well I am feeling all of the things that my mind is processing still leaves me fragile. 

Continued ... Holiday Happiness

Too Good To Be True?

I am glad I wrote out my thoughts yesterday it helped to clear my mind and ease some of my “meeting new people” anxieties. I had not planned on writing about our social experience yesterday, but there were too many fantastic things that happened – I really would like to. Plus, I am extremely frustrated with my inability to finish my last post from the series 5 Actions That Gave Me Hope About Autism. It is about cultivating my own support network and I am struggling with keeping it focused. I think I am over 2000 words. However, it is 2000 words of scattered thoughts not flowing cohesively. I want it to be shorter. Urg! Aaag! Ug! Those are my most scholarly of words that describe my frustrations. 

I had my normal social anxieties about going to a new place and meeting new people, but something felt different. 

I was not in a panic or overly concerned with how Daniel was going to respond. I think there were multiple factors, but one major factor was that David was at ease. He has been a source of my “enhanced” social anxiety (obviously not the source) in the past because of his own social anxieties. It has been a long time since he has found anyone that he could relate to and all of my efforts of trying to get us connected with others in the past were not successful. There are many reasons for that the simplest of reason, “not our crowd.” I can find topics and things to speak with people if I am put into a social setting I have learned to do that through family situations and as a means to cope – I learned to mirror rather well. David either connects or does not – he has no patience for certain types of people. He is not mean; he just does not waste his energies.

I am intrigued by all people and the more I do not understand them the more I can get fixated on the why’s and how’s of their personality. 

Continued ... Too Good To Be True?

Not In The Mood

I have found myself the last few days going to social media and the phrase, “Not in the mood” pops in my head. I go to my personal page and grow frustrated and tired of all the memes, political hubbub, holiday battle nonsense, pictures of copious amounts of baked goods to the point of gluttony, followed by other rhetoric of what “Christmas” is all about while glaring lighted trees and glowing packages stab my eyes. I do not mean to sound negative, I am not really I am simply processing my feelings of disconnect. I am tired of the fury rising up within me as I read inspirational quotes from people who condemn homosexuality … quotes that talk about loving unconditionally and the true meaning of Christmas while they attack those that they do not even know with their next post. (??)

It irritates me; I roll my eyes and try to let it go.

I go to my other facebook page where us “misfits” are and find much more solace. However, I have found myself thinking the same thing, “Not in the mood.” It means something different on that page though. It means that I am emotionally tired. I find myself reading and wanting to comment. I want so much to interact and participate, but I haven’t the energy. I even start writing comments, put forth all the energy then, delete it because I am not sure how it will be received. So I go through this back and forth battle in my mind of questioning why I cannot just leave a comment without being bombarded with anxiety. This type of thing comes and goes for me. Some days I have no problems interacting other days I feel a rippling fear.

In full circle, thinking of “not in the mood” it seems that my mind has created a trigger statement to protect itself.

Continued ... Not In The Mood

Improving Physical and Emotional Environment II

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

But the greatest obstacle has been his physical environment.  

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

This hinders anyone’s ability to process information.

Continued ... Improving Physical and Emotional Environment II

Improving Physical and Emotional Environment I

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

Everything is important!!

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

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

Continued ... Improving Physical and Emotional Environment I

Urg! Awwg! Bleak! Blaaak! – Mind Work!

I had to get that out. This week has been a whirlwind and I am frazzled. My executive function is basically null and void … more so than, usual. I completely forgot three of the boy’s classes. I had to reschedule a couple of them. I have lost track of time, days, papers, and fatigue swallowed my body on several occasions. One culprit that started this happened last Monday when Daniel’s speech pathologist quit all of the sudden. It started with that, but through the last two weeks other things contributed. Joshua’s OT was supposed to start on a certain day – it had to be rescheduled because of license issues.

The Y cancelled practically every one of my classes because of weather conditions. 

David has had meetings with work and has gone to several meetings, conferences, social media pow wow’s this week. David being social is all kinds of new. I am happy that he is meeting people and getting out, but this week he has been gone a lot AND it has been on my workout nights so … the classes that are now back in session I have missed. My routines are all out of whack, Daniel’s routines are all out of whack, Joshua’s routines are all out of whack, and David’s routines are all out of whack. I like saying “out of whack.” Ariel is doing fine and dandy when all gets to be too much I can find her curled up with a book in bed with Nathaniel the cat who is a little perturbed that we are messing with his daily schedule.

He has to patrol the house, checking on things and us ensuring we are not up to something, you know.

Continued ... Urg! Awwg! Bleak! Blaaak! – Mind Work!

Food Stuff, Diets Egad! Movie & Documentary II (Repost)

I am very much stuck on the second movie I watched. America the Beautiful 2: The Thin Commandments. (Probably because it is a documentary and I love documentaries.) It made me cry too. I wanted to scoop up all the women in the world who suffer from poor body image, hug them, and cry with them. That says a lot because you know I am not about the hugging! Hee hee There are many aspects of this movie that touched me. I thought it brought some perspective into the dieting industry, trickles of the modeling industry, and different perspectives from people all living their lives on a body image spectrum. One extreme to the other, balance and discontent, eyes blinded and eyes opened. I watched this with a heavy heart for all of those who have fallen for the “diet lie.” I have never been that good at dieting, but good at starving myself.

The western culture seems to thrive on diets. (obsession)

The scale has never been a realistic tool for me. I cannot determine what is the difference between 98 pounds and 130 pounds they look the same in the mirror. I did not have a realistic view of my body when I was pregnant either. Quite honestly, I thought I looked skinnier pregnant with the twins. Explain that! No clue. I thought I was huge with Joshua. See no rhyme or reason to this stuff for me. I found several resources that I plan to devote more time to, but skimmed over today. One was this HEALTHY BODY IMAGE Teaching Kids to Eat and Love Their Bodies Too There is a lot in this, but I am sharing some info about dieting. (That link has since, been taken down. I am trying to locate info about it.)

Continued ... Food Stuff, Diets Egad! Movie & Documentary II

Perceptions and Stuff (Repost)

Alright after yesterday I could not let go of the thoughts about how I perceive things. I got really focused on perception, and the web search began. As I was explaining that I have a constant story going on in my mind I wrote:

I think that I do this because I know and have known my whole life that my perception can be off. In order to make sure that I am as accurate as possible I have created a lifelong story to maintain detailed memories. I will not say that I am 100% accurate in my perception, but my memory is quite good. Unless I am overloaded then, my short-term memory can get jumbled. However, I am usually able to keep an accurate memory, though my perception may be off.

Now that I think of it, my story telling is most likely scripting.

I have learned to control talking out loud the scripts that are racing in my mind or repeating what others say…most of the time. I still say things and I still type things thinking that people know what I am talking about. I forget that they cannot hear what is going on in my mind. Lol! The more I think about it I think that I may be wrong about my perception. My perception may not be that off. I believe I have found yet another source of anxiety that I can control. My fear of perceiving things wrong stems from me feeling like I am being judgmental instead of perceptive. Or that I am inaccurate in how a person feels based solely on their words and actions. I realize that most people do not share what they are truly feeling. I know that I have had this epiphany before, the problem is, I will not remember. It is a perception thing and people can change from day to day.

With some people the person they want you to perceive them as changes on a daily bases.

Continued ... Perceptions and Stuff

“Sometimes I Feel Beep”

This weekend I have been struggling with emotions. I know, big surprise! I have no idea what I am actually feeling and I keep wavering with a flux of feelings. One moment I am fine, the next I am irritated, the next too fatigued to even feel anything, the next joyful, the next angry, the next sad, back to feeling some sort of jollity. I have no explanation; frankly I am tired of analyzing myself so I am not going to. I have too much to do and the reality is this is what my brain does. I can break down into great detail every single thing that is causing me to feel such a multiplex of emotions, however; today it can be summed up to this – it is December.

That is all.

This month holds too many traumas, confusing social experiences, too much sensory sensations and cold weather. Those wrapped up into a big blanket of unresolved pain, confusion, overwhelming intensities of joy and love, enhanced by anxieties all sweep around and through me creating a vortex of emotional whirling. So when Joshua handed me a piece of paper that read,

“I love you. But sometimes I feel like I’m beep.” 

Continued ... “Sometimes I Feel Beep”

Going Down As One Of The Great Days

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

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

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

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

Continued ... Going Down As One Of The Great Days

Autism Cannot Be Blamed for Everything

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

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

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

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


Continued ... Autism Cannot Be Blamed for Everything

A Look At Criticism & Negative Self-Talk

Recently, Inner Aspie shared a Positively Speaking Challenge that she decided to do as a personal goal for 7 days. I read her personal challenges and pondered over them for that week. I realized that I tend to be more harsh and critical on myself than anyone else. I overcompensate any negative thoughts toward someone else by magnifying their good qualities and turning all of the negative on myself. I used to be a mix of letting everything out on someone without a thought and self-attack.

At some point, the guilt I felt after criticizing, expressing my anger, frustrations, opinions, etc… was too much. 

I was already prone to this type of thinking, but I would stand up for myself and tell people they were full of it they criticized me. I would then, (still do) internalize all of their comments and negativity, but I still told them to shove it. I know that the complete internalization transition became rooted once I started going to church. I adopted the false belief that if I had any negative feelings, or expressed myself in a way that upset others than, I was being evil and wrong. A “Christian” never hurts another living soul. While I believe, we should not hurt others, to turn that onto myself is just as wrong. I am a human being too who does not deserve constant criticism by anyone, including myself.

My mom and I talked about this last week. 

Continued ... A Look At Criticism & Negative Self-Talk

Incredible Day, Though Socially Exhausted – Totally Worth It!

I am utterly exhausted. My mind is fuzzy, my body is drained, my eyes feel heavy, and social fatigue is creeping through my bones. However, this week; including today had too many high points that I do not want to forget. The days leading up to Thanksgiving had me a little worried as to how the actual day would manifest. Every year it has been a challenging day, it inevitably would end up being a day of meltdowns. Daniel had a difficult time adjusting to the change of the day. For years, he could not understand why David would take the day off. In his mind, he was supposed to be in his office even if it was a holiday.

Last year was a little better, but it did end up being rough later in the evening and several days afterward.

This year, Daniel (all the kids) stimmed heavily by Wednesday Daniel pretty much secluded himself into his room for most of the day surrounded by his stuffed animals, electronic toys, covered with his weighted blanket. I checked on him a lot. He had not done that in such a long time that I wanted to be sure he was not over stimulating himself. He tends to do that when he spends too much time with his stimming loves and I need to help him regulate. Stims are great unless they become obsessive and induce anger or frustration. He was doing fine which was a pleasant surprise this year.

On Thanksgiving, day we were all very jolly.

Continued ... Incredible Day, Though Socially Exhausted – Totally Worth It!

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

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

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

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

Sorry, little tangent.

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

Empowerment and Validation

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

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

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

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

Continued ... Empowerment and Validation

Intermission Post!

My brain is all a clutter!! After sharing the last three posts, I am feeling vulnerable and anxious. I will continue my series when I am not so rambly and jumbled. I am sure it has much to do with Thanksgiving next week and the many social encounters I have had the past two weeks – along with delayed reactions to moving. My brain always takes longer to catch up and process everything. In light of that, I thought it may be a good idea for me to share about some things that have been happening. Daniel has surprised me in several ways this week. He and Joshua blew me away the other day! However, great progress can manifest great meltdowns. I share that because I think many people forget, including me.

Whenever there are major connections being made in the brain it takes a lot to process.

It affects the entire body and all the systems going on in there, for Autistics it can cause overwhelming emotions and unexpected reactions. For me, I have also seen this with my kids, when it comes to socializing or trying new things the excitement can take over and we do not realize how much we are affected by what we are doing the next thing we know we are crying feeling very sad, or we become irritable, sometimes angry and have no idea why. Trying something new takes much thought for me many times the attempt seems to come out of nowhere as if it is spontaneous when in actuality; it has been a long time brewing in my mind – I just have not voiced it.

I have seen this pattern with my kids as well.

Continued ... Intermission Post!

Grieving Cultural “Norms”- Releasing Idealistic Expectations

There is really so much that is packed into this topic – I cannot touch base on all that I would like to, I will expand on some of these thoughts in the next few posts I share … I did not understand grief until a few years ago, I was perplexed when parents said that they grieved over their child’s autism diagnosis. Out of my confusion, I went in research mode to try to understand grief and understand why these parents felt this way. Grief is predominantly defined as the loss of a loved one or you can also, feel grief with having an illness with no cure. When I understood that, I was able to see the paradigm these parents had about autism (even still today) being an incurable disease. I understood their emotions much more, however; I did not feel the same way. It’s not a disease.

I personally, gained much more understanding when I read this, “Although conventionally focused on the emotional response to loss, it also has physical, cognitive, behavioral, social, spiritual, and philosophical dimensions.” Wiki 

Throughout my life, I did not allow myself to grieve more accurately; I did not understand how to grieve. I do not have the same response to death and loss as others seem to have; my grieving process is different in many ways when it comes to the loss of someone or a pet(s) that I loved. I do not want to dismiss anyone’s emotions or condemn them for what they (feel) felt, however; I encourage people to read A Parent’s Guide to Responding to a Child’s Autism Diagnosis as a more positive approach. Words like “coping” and “grieving” fed into my fears. I chose to reject such social norms of negative thinking, but that came through a process. It was not instantaneous. How could I instantly be accepting of something that I did not understand? Not only that I had to filter through a lot of negative muddled perspectives in order to come to my own conclusions.

I grieved over our world and my naivety of human behaviors, though I did not know that I was mourning and grieving.

Continued ... Grieving Cultural “Norms”- Releasing Idealistic Expectations

5 Actions That Gave Me Hope About Autism

This is the intro post, I suppose; to a series of posts that I will share … I have been wrestling with all sorts of thoughts lately due to the stir in our community in the past week. My emotions and thoughts get all shaken and I lose my balance when these types of things happen. I know that many times it is a good thing and a lot of beneficial effects can come from it, (one being ”This is Autism” flashblog) however; I get overwhelmed with the many perspectives and I have a hard time discerning what I am feeling because it feels as though everyone else’s emotions have latched onto me. I cannot go into that now or try to work through those emotions. It’s the holiday season and I have enough to process with that. I need to feel productive, so I will share from my experiences – things that have helped me thus far in our autism journey.

These five things came to mind when I thought about what helped me with my transitions through our autism journey.

1. Grieving Cultural ”Norms”/Releasing Idealistic Expectations 
2. Being Empowered and Validated by Others
3. Not Blaming Autism for Everything 
4. Improving our Physical and Emotional Environment
5. Cultivating My Own Support Network 

 There were certain people and information that truly helped me and gave me hope.
Continued  ... 5 Actions That Gave Me Hope About Autism

“This is Autism” (Means to Me…)

Last Monday, Autism Speaks told the world that autism is:

 . . . living in despair

 . . . fear of the future

 . . .exhausted, broken parents

. . . lost, helpless, burdensome children

. . .  a national emergency

If that’s not what autism is to you, join us on Monday November 18th for the “This is Autism” flashblog.

~~~~~~~~~~~~

The words above are not new, I have seen them in various ways all over the media and social outlets since Autism became a common word in our household. In the beginning of our journey, those types of words were the dominating ones on the internet. Though, I did not understand at the time what Autism was; I still did not feel these types of things about my child. Now several years later, I have my “official” Autism (Aspergers) diagnosis, and our other son is in the process of receiving his as well.

Those words above and the similar ones like them were contributing factors to a poem that I am going to share. However, before I do I want to say a little more. We live each day with hope and a realistic view of what our children’s future have in store. Their future along with many other Autistic’s, child and adult alike, have promising futures because of what is happening right now. The gathering of voices to make a difference that cause lasting change is what I see. I see technology opening up possibilities that we cannot even image at this time – some of us may be imagining it right now! 

For this flashblog we were to share what ”This is Autism” means to you.”Continued ...

“This is Autism” (Means to Me…)

My Body Is Retaliating, I Think

Forewarning, sharing a bit about woman issues.   

In my post I’m Tired, Who Knew?  I shared a little about how I did not realize that I was tired. My tiredness has increased – I continue to battle fatigue. People who are around me have had no clue that I am in a lot of pain, I am exhausted, and my emotions have been in an increased irritable state. It has been a little noticeable that I am irritable and my patience has been stretched. I have not been mean or anything – just things that do not ordinarily bother me are bothering me. I had not noticed, I mean I noticed these things; however, just as “being tired” there is no time.

No time for fatigue or pain!

I had not paid much attention, but I could see significant differences in my workout performances along with how I felt afterward. I knew that I would have to recover from the move and that I may have, some slight issues because I ran out of my medication. I take medication to try to stop my bleeding. I have woman issues that cannot be explained. Last October, I went in to get everything examined. The doctor wanted to see if anything could be found through ultrasound and other tests. It sounded as if my endometriosis had come back – nope. Possibly cyst, abnormal paps smear, polyps, something on my cervix  - nope.

Nary a thing wrong with me except he found a laceration and I had been bleeding for over a year.

Continued ... My Body Is Retaliating, I Think

Autism Speaks – House of Cards – Similar?

Am I comparing Autism Speaks to the Netflix show House of Cards? Why indeed I am. I watched the series just this week and noticed similarities in the politics of one’s personal agenda that led to the underhanded, spiderwebish manipulations, the ego-stroking, strong-arming, and fear-mongering of people and their destruction, without a single thought or care. I have yet, to hear or read the countless ways Autism Speaks has actually helped families – they are a directory of support. They funnel you through all sorts of links (link farm) and can connect you to the services that have shared their link/contact information with them. They do offer tool kits, blog posts sharing the latest Autism news or scientific “breakthroughs”, and other tidbits of information that may be beneficial to people.

However, on a personal level, I honestly have not seen much evidence of their contributions in real-life scenarios.

The local chapters I’ve contacted, in the early years, were happy to direct me to therapists and tried to convince me to jump on board with their local walks and fund-raising, but they could not help me directly with our financial burden and lack of insurance. That is my experience; maybe others have had more beneficial outcomes. After my experience, I pretty much forgot about them because my time was better spent on helping my child in our everyday life. Because they could not help, I did not see a reason to support them. My little bit of money went toward used books so I could learn about Autism, Occupational and Speech therapies, sensory processing disorder, and purchasing the cheap equivalents to the items that I needed to do the therapies.

I still had very little knowledge about Autism Speaks at the time.

Continued ... Autism Speaks – House of Cards – Similar?

Joshua’s School Evaluation – Good News!

Today was Joshua’s evaluation to determine whether he qualified for an IEP. We are still going through some hoops around here to get Joshua’s “official” ASD diagnosis, but the school psychologist, along with the rest of the team are in agreement that he shows “clear ASD traits, at the farther end of the spectrum” they cannot give an official diagnosis, but they feel he qualifies for services and that is what matters.

What a relief!

The whole meeting went very well and it was confirming for me. The special needs director seemed to be surprised at my understanding and willingness to move forward as quickly as possible, I assume she had forgotten that Daniel is my son as well. (Sometimes I want to stop these people and say, “Hey, guess what I am Autistic!”, but I do not feel that it would beneficial – at this time.  ) However, the special needs teacher did not and I could hear her giggle a few times when the therapists or director asked me if I understood everything. She said, “You are pretty much a pro at this by now.” Lol! I would not say pro, but I know quite a bit about my kids, their challenges, needs, and strengths so she knows that I will request whatever I feel will best help them and that I understand the process.

Blah, blah, blah I know babbling … 

Continued ... Joshua’s School Evaluation – Good News!

I’m Tired? Who Knew?

I have been going for weeks; my energy levels were at high peaks and I felt as though I would be able to maintain that level forever (except those times when my body shut down on me and I was fatigued, yeah … I always forget those times when my energies are high.) – until, last night. I felt very tired on Wednesday, but assumed that it was the weather and quickly concluded that there was simply too much to do so no time for tired. No time! Yesterday, I seemed to gain some burst of energy and managed to complete the entire garage mess, mounds of boxes and mish mash all organized and arranged tightly to fit our minivan in a snug little niche of the garage. I became fixated on ensuring that the car would go into the garage yesterday – it HAD to be done that day no exceptions!

I do not know why, my mind just grabbed hold of it and would not let it go. 

I did that while, doing school with the kids, unpacking random boxes inside, and feeding everyone. I thought no doubt I had enough energy to do an hour long boot camp session at the Y. David has been asking me for days if I need to take a break – me? No, NEVER!! There is so much to be done and I have to workout or else my mind may rage into anxiety or meltdown in the midst of all of this change. My instructor got onto me several times about my form. I did not realize how wobbly I was and my sprained ankle is still recovering so I am not at my best. She almost made me sit out several times, the last time she said, “If you are going to hold that bar like that get off my floor! You are tired!”

I looked at her defiantly and held my weight bar correctly while maintaining proper form.

Continued ... I’m Tired? Who Knew?

Smooth Move

This move has been one of the most positive experiences we have had. We have moved a lot over the years … this is our seventh move since David and I have been together. Five of them have been since the kids were born. Every time it has been pretty rough, but we went into survival mode and got it done. Once again, we ended up with very little help and that was a source of “almost” panic for me for several days. However, my dad and one of my sisters were complete rock stars and were a great help to us. My family knows how to move and we are genetically fast!

We can get things done quickly, I am thankful for that gene. 

I think that the preparations I made with this move eased anxiety more so than, in the past. Creating a schedule of when and what I was going to pack, clean, and rearrange made the fear of the “unknown” and the sense that everything was disappearing randomly, not so intense. I am not sure about others, but Daniel and I get on edge when we do not know where our stuff is – if I feel that I have lost something it can send me into a panic. I feel as though I have lost part of myself. Daniel seems to respond in the same way. Ariel and Joshua have their moments as well, but their belongings were all in their rooms. Daniel and I had no room really so our belongings were spread throughout the house on shelves or spaces where I could fit them. I was able to keep calm for the most part during all of this, but the last two weeks was getting intense.

We had to change our plans and try to move as much as possible on Friday instead of Saturday.

Continued .. Smooth Move

Woolly Bear Happy! (Pyrrharctia isabella)

Hello!! I will upfront here, I am almost in a panic attack. My chest is heavy, I am having a hard time breathing, and my head is spinning … Panic, panic, panic! Is soaring through my head. I was doing fine only moments ago, so I thought. I was able to pull out of my irritable mood from yesterday, but today anxiety is all-consuming. There is so much to do and I cannot get my mind to focus on anything. I am freaking out because it looks like we will only have help moving on Friday for a few hours. It is these times that it can suck only having virtual friends – I LOVE my virtual friends, but I really wish some of you lived closer so we could help each other out in the physical world.

It would be nice to have a person here who could just “understand.”

You know what I mean? Not necessarily help move, but have understanding eyes – someone who could relate to why I am almost on the verge of tears feeling utterly OUT-OF-CONTROL! I know I will be fine – I am riding (writing) out the anxiety at the moment. As I write, my breathing is getting in sync with my typing. Only seconds ago, the typing was rapid and furious, I can feel myself typing slower and calmer … with huge deep breaths I am finding my calm. However, the tears are coming and I cannot stop them. I suppose, I should just let them go.  As my body and mind go through its course of release, I see this as an opportunity to change some negative thinking.

I hear the many questions of “Why?” bombard my mind.

Continued ... Woolly Bear Happy! (Pyrrharctia isabella)

Chaos! Stress! Chaos!

I am processing a lot in this post – I hope to calm myself a little. I feel as though the world is ending – everything is exploding all around me and negativity is trying to consume my thoughts. At the same time, I am excited, full of joy, and quite giddy. I tend to have no sense of awareness of my stress. I do not feel stressed, however, when I watch a comedy show with friends gathering together calling for Holiday lights to be turned on and I begin to tear up I know something is wrong. Only a couple of weeks ago, David said that we needed to buy a new Christmas tree because ours is ruined from the leaking garage here.

My response?

“I do not want to waste any money on a tree. We do not have money for that.” David’s response, “I want a tree and the kids really like having a tree.” In my ever so understanding voice, (not really) I said, “We’ll just get a stick from the yard and put some tinsel on it.” I did immediately, realize how ridiculous that was, but a tree is not a priority to me. Um, yeah we will be getting a tree.  I share that to give you some insight to how much I am not the decorating Christmassy light type of person so for me to tear up at friends trying make Holiday lights come on and be all winter fest cheery is not something that moves me.

My moods have been floundering all over the place the past two weeks.

Continued ... Chaos! Stress! Chaos!

Making Friends With Triggers II (repost)

I believe that those of us who are on the autism spectrum are possibly more susceptible to more traumas on a daily basis. Our intense sensory issues, and if you have synesthesia like I do the sensory world is like being plopped into a whirlwind of emotional and sensory chaos pounding in, through, and out of your body constantly. It can make for traumatic experiences that others would never think of. Even if you do not have synesthesia, sensory processing issues can cause your world to be painful, confusing, and/or scary. Social confusion can cause your world to be emotionally painful, anxiety filled, and scary! Imagine how scary and traumatic this world is when you have no clue that you have sensory issues, social confusion, synesthesia, or that you process very differently from your peers, and others.

Traumatic. 

It is a little different for those on the autism spectrum because sometimes the tiniest thing could be traumatic. For those of us who feel, and experience intensely because of the way our brain is wired, something that is seemingly harmless to the average person may think our feelings of trauma are senseless. Possibly even made-up, irrational, foolish, stupid, attention seeking, annoying, and bothersome. I could add a plethora of adjectives to this list, but I think you get the point. (A side note here,  no one should downplay trauma. Every person is different, the same goes with stress and anxiety, these feelings are real for the person feeling them, whether you believe it are or not. Validate and help, you should not judge and condemn what you do not understand.)

They are none of the above. Continued ... Making Friends With Triggers II

Faking Happy I (Repost)

David made a statement to me the other day that shook me quite a lot. I cannot recall his exact words for the whole statement, but it was something like: “You have the ability to stay in long-term relationships completely unhappy, and no one knows it except for you. You assume that you have voiced or expressed your unhappiness clearly, but in reality you seem perfectly fine.” I felt the tears well up in my eyes, as I stared at him feeling the truth of those penetrating words. Those words have been swimming around in my head since he spoke them to me. My thoughts have been filled with the pierce of what those words meant to me. He was not being mean to me — he was stating the obvious to me. I thought that I had been expressing myself all of these years. I assumed that others knew that I was in emotional pain, angry, or frustrated. The revelation of people being unable to read me did not hit until he said that.

My best friend that I mentioned in a previous post, I was not happy with.

She and I were not good together. It was a clear co-dependent relationship that manifested because she wanted to escape her home life and I wanted a live-in person that I could talk to all the time. I was a teenager in desperate need of a person to help me with social situations. I did not know what a friend was either. I had damaged many of my friendships with my quirks and oddities or social confusion, and shutdowns where I would cut them off completely. Or my so-called friends treated me poorly, and eventually I figured it out and cut them out of my life. I did not know what friendships were supposed to look like. I did not have examples of healthy romantic relationships either. I assumed that since these people were with me all the time that they knew how they were hurting me, and that brought about feelings that they were doing it on purpose (some actually were). I would then take on the responsibility for their mistreatment thinking that if I could only do better or be nicer then they would stop.

I assumed if you were good and nice, you would win people over. Continued ... Faking Happy I

Unexpected Emotions

The other night Ariel and Joshua surprised me with drawings. I wondered what was going on when Ariel asked me, “Mom, what is your favorite thing in the whole world.” My response was, “My kids.” She skipped out of the room and a several minutes later came in with a picture of her and her brothers, a panther, some flowers, my breakfast, and of course my other most favorite things 8′s and infinities. I was taken aback by it. She had never created a picture for me that like that. She had created pictures for me before, but they normally had to do with her emotions and the things that she liked.

A little while later, Joshua handed me a picture too. 

He wrote out, “I love you mom and dod.” He did it all by himself! (He meant dad, he could not leave dad out.) He has such difficulty with handwriting and spelling so I was ecstatic that he did all of that on his own. It was extra special because I know how hard he had to work. He drew a garden, different colored lines to represent each of us in the family, some eights, and infinities too. He told me that the blue line was him and the purple was me.  I was surprised by the emotions that I had felt. I was overwhelmed with feel goodness and a moment of appreciation. I have expressed my feelings of not being appreciated or “seen” to David on several occasions. It has come up on Mother’s Day and my birthday each year.

Not because of me, but because of David’s own triggers with those days. 

Continued ... Unexpected Emotions