Aspergers and Me...My First Post

I was curious as to how long I had been blogging (jan. 27, 2010) and what my first post was. So here it is..


The story goes that I was a difficult child. Every time someone went to pick me up, I would cry and scream. Why I was so different from my older brother no one knew or cared to explore.
I was born with Aspergers Syndrome as was my father, grandfather, great-grandmother and now, my eldest son. Back then no one knew the term. They just thought I was introverted, shy and over sensitive.
It was like being an alien in a foreign land. I could see people, watch them interact, but be unable to mimic their behaviours. I had no idea how to make a friend, much less keep one.
"Why was everyone else so odd?" "Why was I unable to fit in? Anywhere?"
Aspergers wasn't in the encyclopedias I was reading when I was 9., nor could I find it in the dictionaries I browsed. I did read about autism, but only a few criteria matched up.
I'd like to talk about my Apsergers and what it was and is like. I am 46 now and only gave name to my condition 5 years ago when my eldest son was diagnosed. Looking at my son who is all of 17, is like looking in a mirror. His diagnosis has helped me in many ways. It has made my life easier,a thousand fold.
Here are some of my observations:
THOUGHTS ARE OBSESSIVE
If I get an idea in my head, say...I want to start a blog...the rest of the world comes to a halt and vanishes. There is no laundry that needs doing, no that phone doesn't need answering, I am not hungry..nothing else matters.
The immediate train of thought is the only thing that exists and I must do everything, concentrate all my efforts and resources into this train. Call it being focused, driven, overly fixated, whatever...that's just the way my brain works.
All Faces Look THE SAME
I have great difficulty remember people I have met. If I meet two blonde women who are in the same decade, I would be hard-pressed to tell them apart were I to meet them again.
I remember how funny it was to watch MTVS, "The Real World" (where I was hopelessly trying to get a clue as to how to socially interact...it was Hopeless) and being unable to distinguish this blonde chicky from that one and one dark haired guy from the other...Faces just don't stand out..(must be why I enjoy seeing people with piercings..I can remember piercings) Everyone looks the same, nondescript.
EMOTIONS ARE A CHALLENGE
For one thing, identifying how I am feeling is quite an effort. Its difficult for me to label my emotions. They just don't fall into neat little categories. And it has only been in the past few years that I have become somewhat comfortable with being on the human spectrum and displaying my emotions.
They seemed to be....things...best left in a barrel with a strong lid. LOL...but seriously. Other people seemed to have these feelings willy-nilly and just be all over the place with them..being driven first to crash themselves into one wall and the next second to be jumping from a cliff. Really...did I aspire to be like them? Heck no. I was rather self-contained and overly self-controlling.
I remember watching my parents fight. Mom would be emotionally discharging all over the place and father would be quiet and sullen. His response of choice was to throw something, hit someone or just sit and take it.
When people would get upset with me, I would step back and try and process what was going on..often it took me hours to figure altercations out..sometimes days.
Now, watch and Take Two Steps Back because I am now in touch with this beautiful beast called Anger that has allowed me to break through walls and accomplice wondrous feats all because I learned how to tame and use the beast..appropriately.
PAUSE...GIVE ME A MINUTE
While I was the fastest test taker throughout the school years (I either knew the answer or I didn't, now lets move on)(and yes, I do have a high IQ and am quite intellectually talented) if you present me with a brand new situation..ok, like the time the swim teacher wasn't watching my 6 year old and he was bobbing up and down under the water...it took me three days and talking to two trusted friends before I realized that I needed to call the head instructor and appropriately vent my wrath and disapproval at this outrageous occurrence. THREE DAYS. Most parents probably would have figured it out within minutes and approached said instructor but some things process veerrryy veerryy slowly for this Aspie.
I will continue to write and share my exploits...for the Aspergers mind is truly a thing of mystery and horrendous beauty.

Wow, things haven't changed too much since this first post...except my awareness..probably my acceptance of self. Its as if I took these few ideas and expanded on them throughout the past year.
Yeah, 344 posts in a bit over a year...with probably about 10-20 that I have deleted. Guess I must like writing.
OMG, the incident with Younglink almost drowning...that was one scary moment. Seriously, he almost drown before my eyes...pure terrifying...still trying to get over that incident enough to take him to his swim lessons..guess I will actually be doing that this week as partner is laid up.
Actually, everything in my external world has changed this past year...seriously...everything...its just me these days now..its just me that is free, just me that can walk and is physically capable..just me taking the majority of care of Younglink..just me running the house...its kindof surreal to think what it was like a year ago..surreal, and just plain sad...change isn't always easily...it just happens a lot

More Thoughts on Selective Mutism

I've been thinking about SM lately. I hope I'm not giving away trade secrets here because I don't want my official Aspie card revoked..maybe they will just cut off one of the corners. There are some things...that are rarely spoken of. Almost like an unwritten code of honor, that we don't share.
Eldest broke one of the unwritten rules a couple of weeks ago. "You never ask for something that you cannot get". It just runs against the grain to ask for something that is unobtainable. We are unusually extremely careful about what we ask for because of the fear of rejection.
I don't know if it is "our", mine and Eldests unwritten rule, that of all Aspies or mine alone. No clue really.
Anyway, I guess I used to see SM as just a part of the visceral, physiological exhaustion process. When the body/ brain overloaded and shut down in response to too much stress. More and more I read where brain chemistry and hormones dictate behaviors and that Aspies and Bipolars share some of that chemistry in the phenomenon of vivid dreams and some roller coaster moods. This past month, I saw and maybe for the very first time, the separateness of SM from pure physical exhaustion. Maybe SM is an aside...is it a separate experience? Or a precursor of the shutdown? Honestly, I didn't think it could exist on its own until recently.
But I digress...its hard to let people in to some of the sacred things. Then I think, well, its not like anyone can stop me from going there or that i will run in to anyone I know there..because it is mine alone.
How does it feel? Its like you are in a stadium for a major sporting event, you know, with lots and lots of noise, people scattered everywhere all yelling and screaming, loudspeakers going with music and cheers, and you see the tunnel...leading out of the stadium. And only you can see the tunnel. And you don't necessarily have to walk towards it because it slowly is moving towards you.
All you have to do is stand up and take a few steps and you are in it. Sure, you can still hear the crowds with the first step...but it gets a little more distant with each one. And more distant..and more..and more. Its like in slow-motion...until you hear the most beautiful of sounds....absolutely nothing...silence.
The lights are dim...there is only breathtakingly beautiful silence.
Physiologically, in real time, real life, my lips and face get heavy and form a sort of mask. I can actually feel it. Almost as if my lips gently clamp shut and on the inside of them there is a slight smile, a subtle turning up of the corners of my mouth that no one can see. Other times I describe it as an invisible vice. And the amount of effort that it takes to verbalize....think Incredible Hulk. It really is very challenging and a monumental effort to get anything through and out.
In a small way, I think part of this might be what the Neuro-Typical feels in that all the rushing, speeding trains of thought that describe my normal thought processes on most days, stops. The trains dissolve, as does the station. Even the tracks disappear. All is calm.
It is Nirvana in that all suffering stops. Ouch, that must be my way of saying that the external becomes too painful..or that the internal simply cannot tolerate anymore.
Maybe a more apt term would be Shangri La, a mysterious, harmonious valley. I know this..it is extremely peaceful and a lot like twilight. Its a resting place, a respite and easily the greatest place of healing. Besides, its the only "off" switch that I own.
It is both beautiful and frightening...and I don't really care for the completely out-of-my-control aspect. I must say that that is the most bothersome part about it..that, and the not knowing if I can ever find my way out of the valley or when that will be. Yeah, the first few times i noticed it, that was the most frightening part...not knowing if or when it will abate. Its a vulnerability, because you can no longer defend yourself verbally. What if a teacher (my most usual opponent) screwed up or challenged me? Then what? Thats the negative part.
On the positive side..omg, it is close to pure heaven...the sky is a slightly overcast blue, you can smell the flowers, even the stream is flowing gently and silently. If I listen, I can hear things happening on the outside. Nothing can hurt me here. Yeah, I become pretty numb here. And no one can hurt me not even me.
And part of me would love nothing more than to live there forever and a very equal part of me wants nothing more than to leave. But it is a fight without fighting. A battle with no weapons or even harsh words. Mostly, its an opportunity for healing and respite. I take it as a genuine, soundless cry.
I guess the only real problem, in my mind, is when it interferes with the everyday existence...when there are things that need doing and only I am the one. And, probably, if it lasts too long...but I cannot really judge time there or what is too long? Can a vacation ever be too long? Is there a time limit on how long a treatment can take to restore one to health? I don't know.
So how does it end...how is it that I leave this place? I never really know, I guess I already established that but usually, almost always, I would think, it is gradual. Maybe I wake up in the morning and I can sense thoughts, words, partial sentences forming slightly overhead. Or maybe I am thrust out when some situation arises in which I am forced, compelled to act.
There have been times when I sensed that Eldest had a lot going on and he wasn't able to articulate anything. I would give him a great big hug or I would call him down stairs from his lair, and have him sit next to me on the couch. It seemed that being in close proximity and gentle physical contact, would "break the spell" or "force the issue". He seemed to come around shortly there after and start talking. More often than not, he would reveal something he had been thinking about, wondering, contemplating..something bugging him. Sometimes not...and we would just sit there for awhile..then he would go outside or upstairs for awhile only to return hours later in a more expressive mood. So physical contact works pretty good. i know of no other way of dealing that is effective.
Anyway, I don't know, it seems like this is the first time that I have had a lot of clarity and been able to see and sense the selective mutism. The biggest thing to remember, always, always, always, it is not a conscious choice. And it is a true quandary.

Positive Characteristic of Aspergers...plagerized from the net

In scouring the internet for info for my next post...I happened to come across the following information. Too often we focus on the challenges of having Aspergers. Let's look at the positives:

A. A qualitative advantage in social interaction, as manifested by a majority of the following:
1. peer relationships characterized by absolute loyalty and impeccable dependability
2. free of sexist, "age-ist", or culturalist biases; ability to regard others at "face value"
3. speaking one’s mind irrespective of social context or adherence to personal beliefs
4. ability to pursue personal theory or perspective despite conflicting evidence
5. seeking an audience or friends capable of: enthusiasm for unique interests and topics;
6. consideration of details; spending time discussing a topic that may not be of primary interest
7. listening without continual judgement or assumption
8. interested primarily in significant contributions to conversation; preferring to avoid ‘ritualistic small talk’ or socially trivial statements and superficial conversation.
9. seeking sincere, positive, genuine friends with an unassuming sense of humour

B. Fluent in "Aspergerese", a social language characterized by at least three of the following:

1. a determination to seek the truth
2. conversation free of hidden meaning or agenda
3. advanced vocabulary and interest in words
4. fascination with word-based humour, such as puns
5. advanced use of pictorial metaphor

C. Cognitive skills characterized by at least four of the following:

1. strong preference for detail over gestalt
2. original, often unique perspective in problem solving
3. exceptional memory and/or recall of details often forgotten or disregarded by others, for example: names, dates, schedules, routines
4. avid perseverance in gathering and cataloguing information on a topic of interest
5. persistence of thought
6. encyclopedic or ‘CD ROM’ knowledge of one or more topics
7. knowledge of routines and a focused desire to maintain order and accuracy
8. clarity of values

D. Additional possible features:
1.acute sensitivity to specific sensory experiences and stimuli, for example: hearing, touch, vision, and/or smell
2. strength in individual sports and games, particularly those involving
3. endurance or visual accuracy, including rowing, swimming, bowling, chess
4. “social unsung hero” with trusting optimism: frequent victim of social
5. weaknesses of others, while steadfast in the belief of the possibility of genuine friendship
6. increased probability over general population of attending university after high school
7. often take care of others outside the range of typical development

Now, on to my original thought/ post.....

Clean Your Room

Oh, it sounds so simply...tell your child to go and Clean Your Room..Unfortunately, unless you get specific, very specific, your Aspie child is going to have a really rough time.
From personal experience, I sorely remember being told to clean my room. Honestly, I did not understand what that meant. Yeah, I saw some stuff on the floor and I'd pick it up or hey, I can move those clothes but for an Aspie to clean a room effectively, it must be done very differently than our neurotypical (non-Aspie) brethren.
First, be specific and break it down. Sending a kid to clean your room is confusing and such a broad, undefined phrase and will probably get you nowhere.
With my eldest I start by saying, "bring down all your dirty clothes". Ok, task 1 accomplished. Then it proceeds, one at a time, hang up your clean clothes, pick the toys off the floor, pick the papers off the floor and put them in this container, then we can actually move on to vacuuming.
One task at a time...Be Very Specific....Demonstrate if needed (as with how to use a vacuum...it took a number of demonstrations for him to feel comfortable)..and offer a little help if needed.
Oh the drama of trying to get him to pick up. I ended up breaking things down further by having him pick up only certain items like just Pokemon cards or only magazines. Now things do actually get done.
After a number of times doing this, anywhere from a couple dozen to a couple hundred, depending on the child, he/ she will be able to clean their room with very little help.
Teaching new tasks...OMG, I decided to teach my son to mow the lawn on the riding lawnmower. I did not realize that this was a whole day task. Looking back, I must laugh at My ignorance.
First off, we, my partner had to help because my patience was running thin that day...we tried for about an hour to get him to actually sit upon the machine, (Old Blue, I have named my green craftsman rider).
Next, we showed him how to turn it on and he just sat, stoic and watched.
Then we explained how to put it in first gear, steer and brake...and told him to get to mowing.
Oh what a sight...He sat on that loud, vibrating mower, arms crossed, the most evil of looks on his face and he sat and he sat refusing to move.
After about a half hour of this, I went out and explained the pattern he should go.
45 minutes later, I kid you not, I went back out and threatened him with taking away his gameboy/ DS/ whatever that little gameplayer is...and I went back inside.
10 or 15 minutes later, he decided to overcome his anxiety and actually get mowing. Boy, was he on unhappy camper. But he accomplished it!!!!
Every weekend thereafter, we asked him to mow the lawn. And every week I could see him becoming more and more comfortable until finally, he wouldn't throw a fit and would just fill the tank, start her up and take off. Whew!!
New tasks are very challenging for the Aspie, especially when they involve loud noise and unfamiliarity.
Myself, I actually didn't start using Old Blue until about 5 years after we purchased it. I had the push mower and had figured out the steps, the pattern that I needed to follow to mow the lawn and I wasn't sure about that rider. But, like my son, I overcame my anxiety and figured out all the steps and now, my partner and I fight over who gets to mow the lawn. It really is pretty darn fun to zip around the yard and try and run over squirrels!
Be specific, Demonstrate and be available for questions, support and encouragement!!!