Happy 7th birthday to me!!

So here is to the seventh time that there's been a February 29th since I was born and to knowing that I will never live long enough to celebrate my "star" birthday [turning the age of your date of birth for me would be 29 but 116 in actual years].  Here's to my first birthday without my dad and to the heartbreak of reaching nearly 6 months that he has been gone.  On my last real birthday my dad sent me a bouquet of flowers as a personal joke because of a stupid movie we had watched.  It has been six months but there are still times when I start to dial his number but then remember that he will not be there.  Sometimes I just shrug it off and sometimes it still hits me hard enough to knock me down.

But aside from that, JD is taking me out tonight and we are going somewhere nice.  He bought Max one of those tuxedo shirts for dogs.  Max was not very certain about it while it was going on but once it was in place he did not mind it.  I feel like this entry is mainly filler but my life is about more than my diffability and the research and other work I do and I do not consider these things filler outside of my blog so I guess I should stop considering them filler within my blog.

Max just came back to check on me.  It is a bit weird when he does this but he will be in another room, doing whatever it is that occupies his time, then he will just stop whatever it is and come to where I am.  He walks up to me and looks at me for a bit then turns around and goes back to whatever he was doing.  Just now he had been playing ball with JD outside - I could see them through the second story window - and had caught the ball but instead of going back to JD Max just went back inside, came up the stairs to where I am and just looked at me.  He is pretty goofy holding a pink tennis ball, wearing a tuxedo shirt, and cocking his head at me.  But after he assessed me for whatever he was looking for he went back outside to JD like nothing happened.  JD is used to this behavior fortunately and he will just wait for Max to come back but it still feels weird to have this sentient being checking up on me.  Some days it makes me feel bad that he does not get to just be a dog but he also gets so excited when I pickup his pack, vest, and/or work leash so I remind myself that Max is happy with his job.  Happy with his job to the point that he willingly stops being a regular dog to ensure he is not needed.  Which is rather cool when I think about it like that.

Reflection

So yesterday's post was the more immediate response to my father's passing.  Today I'd like to reflect on this past 4 months without him.  I had my first Thanksgiving, Christmas, and New Year without him.  Holidays are weird because he was really the only reason I got excited about the holidays.  Thanksgiving I stayed home because I did not want to go with JD to be with his family because [as I suspected] my mother made an appearance there hoping that she could force herself upon me but I was not even there.  [As an aside, JD did capture her disappointment at discovering I was absent on video and assured me that she was miserable for the 20 minutes his family engaged her until she could escape.  I'll admit that made me smile a little - it is the small things in life, after all.

Into the rabbit hole... [Part 1]

So, I have spent a significant amount of time on this post and finally decided just to break it up into multiple parts.  "Into the rabbit hole" will be a series on sensory perception from the inside out and comparatively between overstimulated and understimulated.

ENJOY:

If someone had asked me what it was like to have sensory perception issues a few years ago I would not have been able to put it into words that would have made sense.  Even after reading Temple Grandin's book all I was able to say was that EVERYTHING was TOO MUCH.  That is not quantifiable and mostly the response was 'just ignore it.'

Could you ignore it when:
- your clothing feels like sandpaper tearing off your skin,
- the fluorescent lighting is flickering right in the middle of your brain like fireworks,
- the sounds of the people around you just moving about resonates like the crash of the surf constantly smacking your eardrums,
- the texture of the fabric on the chair of the person next to you is catching their  clothing and making a sound that causes your teeth to itch and your skin to crawl,
- the person's gentle tap to your shoulder hurts like they shoved a red-hot poker into you,
- the uneven edge of the nail you just broke [or chewed off] catches on everything which hurts your ears but you're not sure why,

and all of these things [and more] you have to deal with happen at the same time, constantly, every second of every day but you still have to smile and shake the hand of the person greeting you [though it feels as they just placed a deadWETfish into your palm] and keep thoughts and conversations going like a "normal" person while not flinching or making a rude face, or screaming at them to back away and STOP TOUCHING ME!!! 

I think it has probably been proven that if someone is placed in a soundproof room [where all they can hear are the sounds of their own breath and blood] they will quickly lose their shit. So live in that box while carrying on all the activities of a usual day for 3 months. Then I'll visit you at the nut house and where you can tell me just to ignore it... Provided you can muster any response besides rocking and drooling on yourself.

For Alice the struggle is different yet similar.  There are times when sounds [like our own voices or the media we are enjoying - music, TV, etc.] sound louder or softer than others perceive the same sound, or the light is brighter/dimmer, the smell is a pleasant whiff/horrible smog...  but for Alice it is a constant struggle for enough sensory input: She sits at the buffet and starves [while I try to not vomit the excess onto the person next to me... enjoy your next crowded buffet.]

As a toddler, she would stuff her mouth; past the point of full and to the point of gagging; just so she could feel something on her tounge and between her cheeks.  We used special oral sticks with differently-textured ends to rub inside her mouth to give her that sensory nourishment she craved and desperately needed.

Sometimes I have to intentionally overload one of my senses [usually hearing by playing my music and singing along] just so I can focus on whatever needs my attention.  I loved driving my car and turning the sound up to the point that it filled the small two-seater with the vibrations of the bass and the beat and the mellow resonance of the singing voice.  That was my squeeze machine and everything was okay once I made it to the car.  Once I could no longer drive I had to find other ways to push the release button.  On more than one occasion this involved JD picking me up and driving me around with the music loud in his car.  Alice also needs extra stimuli to function but for her it isn't an overload of one sense to blot out the others but instead she has to meet one need [usually touch] so she can concentrate on anything other than the incessant need for sensory input.

Like Alice in Wonderland, but without her guide rabbit...

or psychedelic drugs.  As she rounded out her third-grade year, my niece [is she still my niece if her uncle and I are divorced?] began having marked problems at school.  She was suffering meltdowns, anxiety, stress, and a decline in her academics. 

JD mentioned it in passing so I got involved.

Background: Alice had been diagnosed with sensory processing issues as a toddler but where I am always overstimulated [and shut down] she is understimulated [and explodes].  When JD and I were married, we had Alice twice a week.  I knew I had sensory processing issues and was helping with Alice but I had no idea about autism at that point.

It was interesting to see the differences between Alice and me because it also allowed me to see more about how the sensory issues affected me.  An autistic in a sea of NT's may not always realize they are different, but start pointing out some differences in specific areas and I started to catch on quick.  Plus with Alice being 3/4 [the "Learning to express yourself" age] I was able to help her communicate her sensory needs while I learned more about how both of us experienced the world.  [More about this in a later post.]

Present: After discussing the situation with JD's sister I made some recommendations for adjustments at school.  When those helped I was welcomed to become more involved.  Armed with my new knowledge of autism I realized Alice qualified as autistic under DSM5 [but not DSM-IV].  At this point, JD's sister was not very happy with me but after she had some time to process [and talk with a JD who has much more understanding and care for who I am] she came to accept my opinion as a starting point.  It helps that the school counselor saw several of the same things I noticed.

So all my studying and research work served a purpose, JD and I have mended several bridges, and Alice now comes to my home once a week.  Her transition back to school this year was a pleasant one.  As much as I do not want kids, I enjoy having Alice back in my life.  Rocky still is not sure about her but it is funny to watch him sneak up on her then run off once she acknowledges him.

The Darker Side: Si vis pacem, para bellum

This particular blog post is highly negative and dark.  I express my thoughts on suicide [which include that it is illogical and solves nothing] and describe the horrible boughts of anxiety/panic that I have been experiencing lately.

I begin by talking about my high IQ and excellent memory and how my brain has developed a safety mechanism that protects me from my traumatic past.  However, this mechanism is not enough to spare me from the effects of what I went through for four years at my job.  This is where the negativity comes out to play.  

If you are prone to anxiety or have struggled with suicide, I do not recommend that you read the full entry.  If you still would like to read what is alluded to above, you have to click to read those parts.
 
Obviously I am not giving up and I am not fleeing town.  I started this blog to try and process what was going on with me as well as to learn more about my diagnosis.  An added benefit is that I get something to do that occupies my mind and gives me something else to focus on.  Unfortunately, I had to dwell on these things at the start of last week and then was unable to shake them.

JD has been at my house since Wednesday and I have been off work.  One thing I can say, JD has managed to be very supportive.  One of the issues we had was with his perception of what was going on at my work.  I guess the last two years have gone a long way toward allowing him to understand and accept.  I do not know if we will end up back as husband and wife, but I do know we will be okay as friends.  And that would be enough.



Preface:
A few months ago I read where autistic children who desired the social interaction but did not receive it tended to develop anxiety and/or depression [I believe the article cited both, but I know it cited anxiety].  I can see the truth in that, but I am fortunate that my anxiety stays confined to situations where I am being misunderstood but does not usually affect my daily life.  I am fortunate that I occasionally have a "depressed mood," or a period of mild depression, as opposed to suffering from clinical depression.  I am also fortunate that with my high IQ (130 + based on average of scores) and excellent memory, that my "bad" memories of negative experiences tend to get tagged and filed where they do not often get accessed but also are not forgotten.  It is a protection mechanism that I am grateful for; the negative memories are there [and if I go "looking" for them, I still get to relive them vividly] but I am allowed to maintain my "innocent" and naive personality trait and not hold a grudge.  An unfortunate side to that is since I do not hold a grudge, it took way too much before I was finally able to break ties with my mother, and other assorted family members.  A good counter to this is that, when it came to the shit I have been through at work, I was able to persevere and maintain at work without impulsively quitting [even when I wanted to] or telling anyone to fuck off.
 
In the end, that does not matter.  It does not matter that I have been nothing but open and honest.  It does not matter that I do not have an ulterior motive.  It does not matter that I do not have the motivation to manipulate people.  It does not matter that I can objectively look at a situation without having an emotional response that I need to overcome.  It does not matter as the only things that matter are the perceptions and choices of those who have control.  They perceive an ulterior motive, a manipulating quality, and a false claim of either my diagnosis or the affects of the autism.  An added part of the frustration is the fact that they have just ignored the rules.

I think part of the problem is ignorance regarding the autism spectrum and part of the problem is the motives of management.  At this point, regardless of what has happened, it may appear more beneficial to management to maintain their decisions and hope that I do not file in court [or that if I do, I do not win].

Point:
So the last week I have had a very hard time ignoring the frustration of my situation.  I was fired in May after almost five and a half years of employment.  Four years of that was filled with attempts to gain accommodations after the terms of my employment had been altered.  I have a large "folder" of memories stored up and recently had to start dealing with and sorting through those memories.  The memories are vivid, include feelings that are difficult to process, and create a state of endorphin-spiking, fight-or-flight, fear and anxiety-ridden panic.  I had to go through all these experiences and got to process them as a unit, as opposed to individual happenings.  It was clear to me that management was intent only on maintaining their denials of responsibility, claims of appropriate action, and eventual finding that I was an employee with poor work performance who needed to be fired.  Their decisions, actions, and in-actions alike have made my degree, passion, and desired career path null and void.

Now I am not a suicide candidate as it is illogical and accomplishes nothing but the other day I found myself envying individuals who could "opt-out" and never have to continue in their footsteps.  Aspects of what they have done and the position they have placed me into took away all of my hope.  I desire to have my life go back the way it used to be.  I desire a resolution.  However, I know that this is not possible and any naive hope I had kept alive for years is gone, crushed, taken.  I have reached the point where just thinking about the things that I have been through causes me to experience the following:

• my chest feels like it is being crushed
• my heart pounds 
• my brain feels like it is swelling and will explode if I do not stop the stress
• extreme [and possibly irrational] fear, anxiety, and panic
• the feeling that I will imminently die
• a migraine which continually increases until I can calm down and think about anything else
• an overwhelming sense of dread
• the lack of desire to persevere

These feelings are so terrible, that I wish to no longer experience them ever again.  I know that I cannot avoid these feelings in the future which makes the whole experience worse.  Previously, the response has not been that extreme but now it appears that this is what I have to look forward to anytime it is brought up.  All last week, each day, that is what I experienced.  I am experiencing it now just writing about it and I am not even thinking about the specifics of what happened.

I know I need to continue, to persevere, so that what happened to me is not done to others.  Knowing that does not change the fact that I want to leave.  Just go and never look back.  New state, new city, new life; just leave everything behind.  Never look back.

Miscommunication - Mind Blindness...

I was trying to come up with a way to respond to Tanner's Dad Tim and while I was processing/mulling that, JD was taking me to dinner. As serendipitous as this sounds, these experiences coincided in a beautiful example and a horrible misunderstanding.  It was one of those weird moments that you see in television and moves where the person identifies the issue or how to fix a problem due to an epiphany received through a later [and completely unrelated] conversation/problem/random statement.  I just hope I was able to type both situations and the connection cohesively [which would make this an even rarer occurrence, lol].

The epiphany came as JD turned to me with this expression of resigned anger and said, "Well, obviously you wanted to go to Applebee's as you mentioned it over and over again."  In that exact moment I realized that just as ASD's are described as having "theory of the mind" issues; NT's also have no idea HOW we are thinking.

From the beginning:
JD came and picked me up and we had planned to go to the Chinese Buffet.  There are two for us to choose from, but we usually end up going to the closer one.  This time we opted to go to the one that was a little farther away as the cost is similar, but the quality difference is noticeable.  Also, we had not gone to that one in awhile.  We get out there, but it has closed.  [Also - win, it is now a Japanese steakhouse/sushi bar except that JD does not eat sushi.]  So the decision was to either go back to the first option or head out to the other Chinese restaurant a little farther down which is more-expensive.  We ended up in lane on the road which could go straight or right.  Let us pause here for a moment, because I want to express how this works.  Snap your fingers.  How long did that take?  This next paragraph happened in that same amount of time.  Just keep that in perspective as you read it.

1- our lane goes straight and right. 2- right is Chinese, more expensive, and straight is Applebee's. 3- JD likes Applebee's, often wants to go there, I do not enjoy Applebee's.  4- we would spend the same amount of money at either restaurant. 5- if I suggest we could go to Applebee's, I have done something that takes JD's preferences into account and he may enjoy Applebee's.

Catch all that?  Now snap your fingers again just to help it feel real.  I do that, that right there, when I problem solve, think about a situation, consider what I am going to do later, etc., etc., etc.. It is awesome and it is exhausting.  [But I would never give it up. NEVER. It is totally worth it.]

Anyway, back to the narrative:
So I say, 'we could also go to Applebee's if you prefer.  We would be spending the same amount.' And that is where it all went horribly awry.  We go straight, he obviously does not wan to go to Applebee's and starts getting frustrated, he turns around, we head back out, I try to explain myself as he is visibly frustrated/angry/something, he turns around again, goes back to Applebee's and parks.  I said, "I just wanted to offer Applebee's because you like Applebee's, I did not want to start a fight or make this complicated."

That is when he turned to me with this expression of resigned anger and said, "Well, obviously you wanted to go to Applebee's as you mentioned it over and over again."

We ended up talking/arguing at the table and from his perspective, we were at Applebee's solely because I wanted Applebee's [even though he should know that I do not like Applebee's - we had that debate several times because he would want Applebee's add I would always rather have O'Charlie's].  When I tried to state how I was looking at the situation, he would counter to the effect of 'oh, so it is my fault.'  No matter what I said, JD could not understand HOW I was thinking.  In my mind, it did not have to be anybody's fault, there was no need to lay fault anywhere. I just wanted to have him understand how/why I was thinking about the situation as this is a fundamental issue in our communication - he cannot understand my way of perceiving the situation.

There is no emotional component [not wanting to be wrong, wanting to make a situation somebody's fault, etc.] when it comes to situations like this.  It is nothing more than the fact that the words coming out of his mouth are not accurate to what I'm actually thinking/trying to say.  It does not matter how bluntly I state it, he is reading between lines that do not exist and refuses to understand that.

Similarly, I feel that this is where Tim and I ended up in our conversation: He is unable to understand the context in which I think. I've been working on this entry since Friday and initially I was trying to come up with a respectful rebuttal to Tim as I do not like confrontation but also I felt that he was just honestly not able to see my perspective.

I believe that Tim's personal emotions regarding his son get in the way of his messaging on Twitter. As an advocate [and co-founder of AutismAid] his tweets are even more important in terms of autism awareness. He has placed himself under scrutiny and others would take their cues regarding how to regard people with autism.

Aside from hurtful comments made [and the reply that it 'made me think']; I have seen where he has placed the "understanding" on a parent who murdered their autistic child instead of placing that understanding onto the people with autism. Tim also made it his place to declare that I 'gave up' because I was not sitting on top of Twitter, waiting for others to notice our exchanges and ask about them. I also feel that when I made it clear I wanted to have a discussion outside of Twitter regarding treatment options, he provided a format [Twitter DM even though I provided my email] and then ignored the sent DM. Before I offer up my complete rebuttal, I invite Tim to a conversation regarding his experiences, thoughts, etc. as it seems only fair.

So Tim, I ask again for a conversation outside of Twitter. I would like to discuss your thoughts/ideas and find out about your experiences while also sharing mine.

So... my weekend...

I had all these articles and blogs marked to read but, you may have noticed I was AWOL starting Saturday... Saturday afternoon I was starting to work on stuff when JD came and picked Rocky and me up. We went to a farmer's market and then to JD's. JD made dinner and then we watched movies while Rocky alternately explored and cuddled with us. I ended up staying at JD's overnight.  Sunday JD took me out to run my errands (groceries, supplies for Rocky, and then a few DIY apartment projects - including hanging lamps so no more cords for Rocky to chew).  JD brought me home and helped me put everything away (and hang the lamps) then he spent the evening here.

I know this doesn't equal any work toward my blog (or an ever-increasing number of interesting links) but I had a nice weekend.

Dealing with Failure...

Failure can be hard to accept, especially when your initial reaction to any idea is opposition [oppositional defiant disorder can be included in the Asperger's package].  It's especially hard when you feel like so much depends on your success... trying to escape a bad home situation, trying to keep a job, trying to finish just anything... it could be a small task, or a large one, but if something keeps you from succeeding [especially if it is yourself] it can be hard to cope with that failure.

Inspired by: Failure?