Self-Restraint, Self Control and Aspergers

I didn't realize it, till last week, but I wake up in morning and put on two straitjackets. No, make that one straitjacket and a muzzle.
From the get-go, I start monitoring and censuring my verbalizations and my erratic, unpredictable body movements. One would think and ponder why I would need to do this not only on the outside of my home amongst peoples, but also, most definitely within my own secure environment.

The first answer that springs to mind, I have kids. And kids mimic parents. If mom screams at spiders and dad throws chairs you will probably have a child who turns in to an adult who screams and throws chairs. Look it up. It happens...common knowledge.
So, I didn't want my boys to "pick up" and imitate mommy and her ticky little dances and talking off the top of her head to herself. It just seemed very prudential, practical, necessary.
Thus I have lived in a state of perpetual self-restraint and self-censorship. And it has pretty much felt like a cage with shades and blinds. I mean, how can i be happy and comfortable with who I am if i am so afraid to show my true self? Really?
Another factor would be..hmmm, a bit tougher here...I..don't want to embarrass myself..to my self. I know what looks stupid and mental and I didn't want to see my self behaving in ...hmmm, autistic, spastic ways. Yeah, I didn't want to embarrass myself.
How can one like oneself when the majority of existence is spent hiding and covering the mirrors?
So, at home, my haven of safe, I was anything but free.
The whole going out in public, everyone can understand relatively easy with half a brain. Public embarrassment, saying and blurting out the wrong things, ticky dances are simply not acceptable behaviors..I get that.

Funny thing happened last week...you may have heard about it:)
I went to an autism conference and from my own judgement the vast majority of peoples at this whole hotel were educators and peoples familiar with Aspergers and Autism. And I felt really, really free.
I mean, where else could I have left the straitjacket and muzzle at home and gone skipping down the hallways when I felt like it? Where else would I have felt comfortable, pilfering party favors, asking strangers for strange things and not feel at all self-conscious? Where else could I have asked complete strangers if I could touch their pretty shiny things? (See previous post on Magpie Syndrome..yeah, I am still stuck there. I don't get out much and there were Lots and Lots of pretty shinies :)
I know of no other location where I could freely and out loud be Aspie. And I graciously and with humbled pride easily announced it to everyone I met. Never before, cupcake, never before. I found it incredibly freeing and liberating.
I have been known to laugh out loud, not often and it highly depends on the company and amount of alcohol I have ingested, but it can happen. However, I have never (except with my Partner) rip-roared laughed and chuckled, oh chortled (dic: to make or utter with a gleeful chuckling or snorting sound) in the presence of any one else ever. Omg, it was a riot. I just let it all hang out...I kid you not. And even more astounding, I wasn't embarrassed.

Man, I really let myself go and I saw myself in brand new ways. And I didn't realize how much energy and effort I was putting into self-restraining every word and motion from the moment i got up in the morning until 2am when I went to bed at night.
You see, even home alone, I felt ashamed which is even a more appropriate term than embarrassed as it implies a certain degree of shame and self-loathing. In a strong way, I was denying who I truly was...my Aspergers, my Autism. I have been so self-conscious and hidden, even to me. There were just so many barriers, layer after layer of them that I had been incorporating over the many years.
But then, I got to experience who i really am...and Honey there ain't any going back.
I refuse to go back into the dark, in the recesses of the closet, back into that cage-like, muffled existence. I refuse to be ashamed or embarrassed at that which God made in such perfection. I simply will hide no more, especially from myself. I am allll good. I am Aspie

Limb Differences and Staring

As my regular readers know, my youngest son was born minus a left hand, acheiria in medical terms.Part of our daily life is dealing with the occasional stares. At seven years of age, we have been through this for awhile and to a great extent, it is pretty mundane and routine. Its healthy for kids to inquire and ask and we actually welcome it. There questions are nothng but honest and curious..its a good thing.
Kids and adults frequently have that "curiosity" stare or the gazing at the unknown, unusual and different and I get that. It is human nature to look at that which perplexes and is out of sync with our norms. I fully understand and don't think twice about that.
Then there are the problem people...those adults that for some reason or another are not satisfied with a passing glance. Those who are either rude, misguided or just plain moronic who think that it is perfectly acceptable to stare at my boy, unrelentingly.
I have used the strategy of simply giving them one, good stare back and that usually gets my point across. Every now and then...and today was one of Those days, I get someone who completely ignores my stare back not once, not twice and not even, Not Even Three times...these people I will disrespectfully term "moronically rude people" or MRP for short. I tried finding words so the acronym would be ASS, but it wouldn't work.
So these MRP's, I try and give the benefit of a doubt. Maybe they know someone who also has a limb difference. Maybe they are engineers or innovators who are trying to figure out how he uses his palm to achieve certain things, maybe they have a mental disorder, stuff like that.
The stare back usually works so I was quite frustrated and at a loss when it did not. Note to self-work on "angry eyes" and eyes that say "you are being very rude". Plus, the situation, at a chapel for a friends funeral, called for some respectful protocol. The location stymied me even more in that it was irreverent and it limited my ability to diffuse it.
I was not free to walk up to her and say "Hi, can I help you?" which can also disarm and bring ones awareness to their own actions.
Anyway, on to the part that got me railed and rankled and it simply burns my butt...at the end of the service, just before everyone was to get up and leave...she turns to her husband sitting next to her and she had a number of words with him. Judging by his sudden and consistent looking in our direction, it was painfully clear that this wench was telling her husband all about it so he could get a looksie before we left.
Now, her husband, fully understood my stare back and kept averting his eyes...see that was acceptable and the usual response. And it really pisses me off when someone is so amused that they feel they must share the ...be...nice...unusual sight. Really, is it that fucking important that you must share that which you so stared at with someone else and call their attention to it.
So, yeah, this set me off. I mean, she was sitting like, 5 feet away from him in direct view...She wasn't even trying to be covert. And little guy was feverishly playing a little video game and I was concerned that if he looked up and saw this..it would hurt his feelings. Really? Can people really be that rude at times? At a chapel? At a funeral? In plain view? Man, wisdom does Not automatically come with age.
For my part, I did all that I could, but I obviously need some more strategies. Seriously, I will practice making angry eyes and try and get a bit more emotion to my stareback cause it failed to work this time.
And after wars, as everyone left....should I have said something? Had it not been a funeral, I may have seriously contemplated it, but for the sanctity of the event and for the respect for my friends family, it was not an option...but I am entitled to spout and sputter about a stupid ass, moronic, extremely rude being who so callously and selfishly infringed upon my right to be out in public and accosted.
The vast majority of people are considerate but every now and then one idiot has to show...such is life. No biggie...lesson learned..new strategies in the works...tomorrow is another day

Inside My World

Sometimes people say the same thing over and over and fail to ever really explain what they mean.
Frequently, I have been know to say "that I live in my own little world". I think that deserves an explanation. Lets' go there....
I live largely within a world of thought, memories, possibilities and emotations. Its like living in a very large room that is filled with loops, streams, fragments and spheres. At times, it seems very crowded and different shapes vie for my attention. Frequently one of these small floating arenas engulf me and I become engrossed, almost trapped and have a hard time escaping whatever thought or memory has captured my attention. Each shape contains either large or small bits of information. Mostly, I sit back, within myself and am analyzing.
Frequently, I am sure it appears, that my eyes have glazed over and it appears that "no one is home". At those times I am all inside...sometimes pondering, sometimes escaping whatever reality is outside of me and taking place.
Various things, such as "what was that conversation about yesterday" "can I remember it word for word?" "what was meant by thus and such" "did I convey what I needed to?" "when I said thus was I heard?" pertain to previous, mostly recent, conversations. Often, hours or days later, I find things that I missed in the conversation..sometimes very important things.

I have very little interest and awareness of the world outside of myself. I have a very narrow lens and rarely notice things, people, situations, words or ideas, that do not pertain directly to me. I have no interest in false gods, celebrities, current tv programming, popular culture, the latest novel, gossip of any kind, predicting the future or where I want to be five years from now, who is dating who, what the most popular song was in 1952, the latest diet or exercise craze, fads of any kind, and hypothetical what ifs.
The majority of my waking life is consumed with how to get through it, my home, my castle, my friends and my family and keeping myself functional. That takes up about 98% of my every day. Seriously, I wish it were only some bad joke but the vast majority of my day is actively engaged in basic functionality.

Words are mutable things of varying caliber, degrees and with a plethora of meaning depending on context, stress, the particular speaker and the spirit in which they are said....very complex. I can easily spend days analyzing a five-minute conversation....easily. For I do want to understand and comprehend..it just doesn't come easy.
Having to spend so much effort figuring out the words, leaves little time for glances and observations regarding facial expressions and body language. I am simply too focused on the words.
And, yes, most people speak at a normal rate of speed that is far too fast for this and other aspies. Either my word processing program is running too slow or I am actively engaged in trying to remember everything that I need to say and searching for pauses in the chat.
I can spend hours planning a five minute conversation for, say, the next day. I have to figure out my points, what is important and put it in a presentable cohesive, easy-to-understand manner.
Lost in thought...yeah, I am frequently there but it has purpose.

So say that I live in this very large room with floaters. I stand in the middle. There must be a door here somewhere for a connection to the outside. Sure, there is one over there on the right. One small doorway that opens to a very narrow, steep, twisty-turny hallway that is about a mile long. (Yeah, I am usually pretty hard to reach.) Every now and then someone ventures down the hall and knocks at my door...Most of the time, I simple do not hear the knock.The depths, focus can prevent that. Sometimes I do and ignore it. I think, most often, people arrive at the door, sense the...depth and treacherousness of the hallway and fear actually knocking. Can't say that I blame them...it is a most unusual stride to the door.

When I venture out...my view of the world outside of myself, outside of my physical home...
To be honest, its a war zone...a chaotic, ever-changing, daunting and somewhat dangerous place full of unpredictability, unspoken expectations, unwritten rules and a constantly changing landscape of mountains and pitfalls.
I constantly seek safe zones and safe people. When that doesn't work, I resort to using pre-approved patterns and manners of walking, behaviors and mental games to get me from point a to point b.
Stepping outside is sensory overload, pure and simple. Its an assault of the senses, a mental maze and all systems up and running, a time of high alert.
The highest variable is people."Who will I run into?" "What will I say?" "What will they ask?" subject matter, mood, will I be able to read them?
Some days I avoid most people..other days I seek them out.It just depends.
Mostly, life is a wicked game of survival..figuring out the bare minimum of what needs doing outside and staying mostly in. Venturing out requires a great deal of pre-planning and effort.
Little things are big things for the aspie. As an example, one of my current dilemmas is something so small,so simple, so not-an-issue for the nt that I hesitate to mention as I am sure it will induce ridicule and absurdity on some level. I can't find a pair of socks to buy that doesn't feel like sandpaper on my feet. I had a dozen pair of the most perfect of socks, all cotton, black, medium weight and they fit and felt just right. Well, I went and wore them all out, getting holes in the heels and had to start pitching them in the garbage. When I was down to one or two pair, I went to the local store where I had purchased them to stock up. Lo and behold, they no longer exist. While they carry the same brand, they have introduced lycra and form-fitting alterations that pinch and do not feel right. I spent that day going to every store in town in the simple and futile attempt to locate a damn pair of socks that i could wear with ease. They no longer exist. My search continues....Yeah, I want so much from life...a damn pair of socks..and no where to be found.
The everyday task of cooking a meal is a complex endeavour. First off, I have to figure out what everyone wants and is willing to eat. Then the grocery list and actual shopping. Being in the kitchen, cooking a meal is a multi-step event that needs careful planning. I frequently talk to myself to help keep me on task and remembering what the next thing is to do. There are also three separate timers that help guide me and keep me from burning and overcooking things. More than once, our smoke alarm has signaled "dinner ready". The average meal probably takes me twice as long to cook and is just another stressful event to try and muddle through.

I like my world inside, mostly due to its low-stress and somewhat predictable nature. I don't have to perform and pretend to be normal. The sometimes overwhelming stress of outside reality will literally throw me into my space so deeply and with great fervor, that its like being locked into a closet. It gets dark and I can't find the door handle to get out even if I wanted to.
The predictability, the patterns I create are so that i can actually have moments, yeah maybe a moment or two where I don't have to actively think. Because the majority of my life, my everyday life, is spent in the thinking process, just trying to get through the day. This is so not a normal, neuro-typical existence....it is so much more work. Some day, I hope to convey that in a depth, meaning and way that doesn't sound so self-pitying and depressing because it is an important point.
You have no idea the sheer amount of work, effort and stress that is required for this aspie to get through an average day. It truly is impossible to fathom. I have great admiration for those aspies who can actually hold down and maintain a job, even a part-time one.
As for parenthood, knowing what I know now,I probably wouldn't have done it. It has not turned out very well. I think my kids suffer needlessly do to my inability to be outside my head and much more aware of who they are and what their needs may be. My focus is so extremely narrow, my introvertedness and hermitage like existence has not allowed me to see their weaknesses and areas needing assistance. My central focus of survival has not helped them in any way, shape or form and having kids was not a really good decision.
But here is where i am....this is what needs doing.

And people ask, I kid you not and this is rather novel...People ask how they can help an aspie. (And I would like to take these requests, mold them into solid form, like a small statuette and set them upon the mantel because they are priceless) So I am going to answer...You keep knocking. And if the door doesn't open, you try again. You don't give up. You make your voice and your physical presence known and available. You listen. You hear. You do not embarrass or make fun of. You do not put the spotlight on. You allow the aspie to be themselves with subtle guidance through the murky waters. You understand or are willing to try and understand that the world is a very scary, overwhelming place and that even simple, mundane tasks require great effort and thought. You realize that your own speech (that which you say when talking to an aspie), is frequently, like trying to decipher a foreign language. You talk slower and listen harder. You are aware that the aspie speaks in a language all their own and try and learn it. You can somewhat grasp the reality that an aspie needs lots of downtime and opportunities to process information. Please don't always expect an immediate answer. You get the idea that emotions and stress can sometimes have a more noticeable, dramatic effect on the aspie. And that Tics Happen, no big deal, just part of being Aspie. Be patient. Be kind. Its really that simple.

Acheiria...My little Lefty...Momma Screws Up

Well, momma isn't scoring too high these days. My little Sebbie..yes, it was only a month or two ago that we surmised that he was born naturally left handed...you know, the hand he was born without. And for the past...oh, seven years, he has routinely eaten everything from rice to corn to meatloaf, etc...with his right hand. We never forced him to use utensils. Sure, he would frequently use a spoon for applesauce and some fruit but at the dinner table we simply accepted that the standard way for Seb to eat was picking up the food with his right hand, rubbing it on the palm (see photo) of his left arm and putting it in his mouth.
Last night it was chop suey so instead of watching him eat rice single handedly and jokingly calling him a "chinaman". I insisted on his using the fork.
OMG....he picked it up like the most foreign of objects and had no clue as to how to maneuver it to pick up food. He had fork in hand and palm had to work with hand to guide the fork in a very erratic, haphazard fashion to attempt to scoop up some rice. He expressed his dismay and really did not want to use it at all but I showed him by example a few times and continued to encourage him to use it citing the old adage that it will become easier with practice.
I felt pretty much like Queen of the Dopes and worst mom of the year for allowing him to not use his fork for all these years. Had i insisted upon it earlier, we could have more quickly addressed the problem.
Part of me thinks that this is very insulting..to be born brain-wired to use a left hand and then to have said hand be non-existent. Actually, I think it really blows and sucks and is extremely unfair...but life has never been about fairness...rather it is about the ability to face every challenge and circumstance with as much dignity and strength as a person can muster.
Damn, yeah, lets give the one-handed kid an Extra challenge...this does not seem right
So, my action plan which is already in motion, is to notify his occupational therapist (done) so she knows what she is up against, notify his teacher (done) so that she can better understand his lack of legible writing skills, make an appt with his prostetisist to refit his prosthetic helper left so that he can actually wear it without it cutting into his elbow and see if said prost. guy can fit Sebbies helper with some sort of adaptation that may, may allow him to scribble with his left. I have an appt scheduled for friday so we can work on the fit...from then, we will see how quickly he gets used to his "helper hand" and go from there.
It would have been nice to have caught this earlier...it must be awfully frustrating for the little guy...I am so very sorry that I missed this..I mean, who would have thought???? Really???

Parenthood...the tv drama

So someone told me about this new show on TV called, "Parenthood" which has a child with Aspergers Syndrome as one of the characters. Its on Tuesday nights, nbc at 10 pm.
The first 5-7 minutes revolves around the family dinner table and everyone is talking at once...this Drama then moves into the kitchen for more of the same. I had a difficult time figuring out anything about anyone those first few minutes and it was all I could do not to change the channel to the Science or History channel. I abhor drama and the confusion and fast talking certainly did not help....So show me this kid with Aspergers Syndrome.
Finally, we get to "Max". He must be about 10 or so. And the tell-tale signs of Aspergers are kinda clear; lack of eye contact, in his own little world, resistance to change, clumsy with physical activities, etc.
His parents responses were typical and well-portrayed. They became quite frustrated at times but really tried to understand and cope as best they could.
In a nutshell, thats really all I can find to say about the show. Maybe I'll feel more loquacious if I catch another episode...Will I make an effort to remember what night its on? I'm not sure....Drama is not my forte.

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!!!