Deciphering The Rules

Whether it is a first-grade teacher or an Ivy League professor, the beginning of the school year or semester is spent introducing students to rules and expectations. When I was growing up, rules were written in chalk on a blackboard. Now in some schools, rules are displayed on interactive whiteboards and typed out using a computer keyboard. The tools have changed, but the rules haven’t changed that much. Such as there’s still the rule that one can’t talk when the teacher is talking and that rule is still a popular one that students break.

I am a retired government employee and my post-retirement job is being a substitute teacher’s aide. I started my fourth school year in a gym class for two days. I heard the P.E. coach’s list of rules 14 times in those two days. It reminded me of playing my favorite song over and over again on my record player back when I was growing up.

The coach didn’t just read the rules out loud; she deciphered them.  That was particularly helpful for those who take verbal instructions literally — word for word — a common trait for those of us on the Autism Spectrum.  If she hadn’t explained them, some students might be trying to live up to something that wasn’t realistic and/or totally confused when the class was playing tag.

For instance, one of the top five was to do your BEST at ALL times. The teacher admitted that the literal meaning wasn’t realistic. She explained she wanted the kids to do their best with what they had that day. If they were in a fantastic mood with energy to match, they should be at the top of their game. If they were not up to speed, she asked they just do the best they could with whatever energy they had to give. I was glad she explained that because I wasn’t as much an eager beaver on my second day as the first day of being her sidekick.

Another one of the top five school district-wide rules was “Keep hands and objects to yourself at all times.” If taken literally, one would think it was NEVER appropriate to touch someone. That’s a good rule when students are standing in line or sitting side-by-side on the gym floor, but not when playing a game like tag where tagging is, more or less, touching someone.  The coach gave examples as to when the rule applies and when it doesn’t.  It’s a good rule, but the “at all times” phrase just needed deciphering.

The coach had her own dozen or so rules in a computer document that she read out loud. One of them was one that took me by surprise.  I never heard of a coach having the rule of “no jackets in the gym!” The students could wear jackets to school but were not to enter the gym wearing one.  Her reasoning behind this rule was that kids might get sick from getting too hot wearing a jacket while doing their exercises and playing games.

This rule gave me an uncomfortable feeling since I was in violation of it.  She didn’t ask me to take it off and I didn’t volunteer to do so. I was not working in a hot-boiling gym or even a warm toasty one. It was so cold in the gym that I felt my knees shivering. I mean that LITERALLY! I assume I was given a pass since I was a substitute or maybe the 20-something old coach wouldn’t ask a thin gray-haired lady to take off her jacket.

 

shivering

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What Is Having Asperger Syndrome Like?

Someone asked me what was it like having Asperger’s. I didn’t mind the question. Quite the contrary! I welcomed the question or any question related to Autism Spectrum Disorder (ASD).  That’s one reason I write about living on the Spectrum. I can’t speak for my fellow ASD travelers since each one of us on the Spectrum is unique. I can describe my own life on the Spectrum, but don’t ask me to explain it.  Those who don’t have ASD can’t understand it and those of us who do can’t explain it.

PLEASE ….

My anxiety goes up a notch or two when I am given the “PLEASE go get the…, find the…, bring me …, it’s in the…next to the…on the right…”.   The longer the instruction string, the least likely the instructor will get positive results from me.

I was helping a friend the other day with an outdoor project and she gave me a few of those type requests in one sitting. The pressure to find what she wanted in record speed put me on panic alert. I did find them but not with record speed and not without my friend repeating or rephrasing the directions. If I were quick on my feet, I would have asked, “Am I getting warmer?” meaning am I getting closer or further from the target of the safari hunt. The items were within a short, I do mean SHORT, distance from me. EMBARRASSING! If there had been a hole, I would have climbed in it until my friend talked me out of it.

BED NECESSITIES

Sleeping with five pillows instead of one. A miserable night if I was reduced to sleeping with the standard number of 1 or even 2. It is just one of my long held rituals to be surrounded by pillows at bedtime. I call it, for lack of a better explanation, my comfort food at bedtime.

DIET ROUTINE – WRITTEN IN STONE

My list of what I eat on a regular basis could be counted on two hands. Most of those items are high in starches. Thus, I am a big fan of bread, bagels, dry cereals, crackers, chips, and popcorn. No salt shaker but what I eat has plenty in it. When I eat my meals is beyond my understanding but I stick to my peculiar eating routine like SUPER glue.

GOOGLE IMAGES WITHOUT WORDS

I am in a conversation and have the floor.  I am telling a story and come to a point where for the life of me I can’t think of the name of the image in my head.  I describe it in a haphazard way where I stutter all over myself. This is the part that frustrates me. A few minutes later, my brain pops the word up. Granted, this surely happens to most people, but in my life on the spectrum, it is the “norm” instead of the exception.

OH CLUMSY ME!

If there is something to trip over, stumble on, tumble over, then one of my toes, feet, or knees will find it. I don’t take daily inventory, but I don’t think I’ve lived a day that I didn’t have a bruise on my person. I’ll only remember how I got a bruise if it hurt so much that I saw lights flashing. It is frustrating to no end when I bump, fall, and trip but I try to take ’em as they come and keep going with bruises galore.

NOT SO FINE ON MOTOR!

Fine motor skills have to do with the small stuff when it comes to movement. This is why my handwriting bears a strong resemblance to chicken scratch. It is why picking up objects between my thumb and finger is no small feat. Such as putting on or off pierced earrings. As hard as I try to hang on to the earring or “back”, it happens without fail of one dropping. The earring is easier to find than the “back” to it. The backs are so small and blend in into the floor that finding one is like looking for a needle in a haystack.

I have come so close at times to give up earrings entirely and forget about my two tiny ear holes.  I give in against my better judgment and buy a pack of cheap earrings at the dollar store just to replace the missing “backs”.

WHY DID I SAY ALL THAT?

I meet a total stranger who gives me an inch. I’ll tell the stranger way more than I want to about myself. It was as if I had provided a total perfect stranger a chapter or two of my audiobook autobiography.  Shortly thereafter, I’m kicking myself as to what in the world was I thinking telling a stranger my life story.

 

Those are just some examples of what it is like to have Asperger’s Syndrome.  Sometimes I have a no-meltdown kind of day.  Other times my autism slaps me in the face and lets me know it’s around and is here to stay.

 

 

 

 

Twenty-Something Pairs of Lungs

An autistic trait that gets me in hot water sometimes is difficulty with verbal instruction.  I think I would do better with a full page of step-by-step written instructions than a half minute of verbal.  Insert a diagram and I’m set to go!

Once upon a time, I was assigned to four kindergarten “kinder” classes.  I had a schedule where I spent some time in each class doing whatever the teacher needed help with.  One of the first things that morning was walking with one of the kinder teachers to another room in the building to pick up crayons.  She was explaining why I would need them for later.  I later learned my interpretation of that conversation was, in a word, OFF!

We stopped by a room that she said later would be where the kids would have art.  I assumed this was the art room and the teacher in the room she introduced me to was the art teacher. The kinder teacher told me the kids would have art in the afternoon and I would go with them and take the crayons with me.  I didn’t think at the time it was strange carrying crayons back to the class.  Why not leave them in the art room with the art teacher?

Well, art time came and I was escorting one of the kinder classes down to the room.  The problem was I forgot about the crayons until I was halfway down the hallway.  Common sense would have dictated my telling the teacher I had to go back and get the crayons.  But back when they handed out common sense, I must have been hiding under the bed.  HA!

My thinking was once the kids were settled in the art room, I would go back and pick up the crayons.  Well, that plan would have worked if there had been an art teacher.  The teacher I saw earlier that morning was NOT the art teacher.

That morning’s conversation with the kinder teacher was replaying in my head and I misinterpreted a few things.  The reason the teacher and I picked up the crayons was because the art teacher was absent that day.  We were not in the art room but occupying one of the general ed 6th grade rooms and it was their teacher who I met that morning.

For all intents and purposes, I was the art teacher!  And, I had 20-something kinder students with a picture for them to color with NO crayons.

Common sense would have dictated I use something called a “telephone” to call the kinder teacher or the office for HELP!  It didn’t occur to me to call until after the end of this unforgettable school day.

Instead, I asked the kinders if anyone knew where “Mrs….” room was since it wasn’t their teacher who had the crayons in her room.  I learned a lesson the hard way.  Don’t ask such a question to 5-year-olds.  Everyone volunteered by raising their hands and their voices with it.  Sheer pandemonium!

I was rescued by the teacher across the hallway who had an ample supply of crayons.  She brought them over and while there, used her “experienced” teaching voice to quieten the kinders down several notches.  Meanwhile, I wouldn’t have blamed her if she wondered what planet I came from.

We all learn some things the hard way.  I learned if I find myself in a jam in a classroom alone with students of whatever age, don’t forget there is such a thing as a telephone to call for HELP!  And, only under exceptional circumstances should I ask for volunteers in a kinder classroom.  This wonderful age group is not my top pick assignment since most kinder classes have 20 or so kids to a class and that’s 20-something pairs of lungs testing my low level of noise tolerance.

 

 

 

 

 

The Dark Side

Upon receiving my diagnosis of a life long disorder at 58 year of age, I’ve had almost that many years of life experience to review. It is an ongoing recollection of past episodes and how they relate to my diagnosis. I was filled with relief upon given the why, Autism Spectrum Disorder (ASD), of my behavior that was not in step with my companions. Knowing it had a name took away the long held notion of being a “being” from another world.

On the bright side, I believe there is a strong connection between my strengths and talents with ASD. My need for routine was useful in getting me to work on time, daily chores done, and bills paid on time. My tendency to hone in on details instead of the big picture was an asset to my once held favorite job as a library cataloger. I fondly recall the one who taught me cataloging telling me, “You’re a natural.”

However, there is the dark side. After a few weeks of celebration of being given something that declared I wasn’t crazy, I am reflecting, too, on the dark side. It isn’t all positive. If it was, the autism spectrum wouldn’t have “disorder” at the end of it.

The reaction of those in my inner and outer circle has been mostly positive but some responses were unsettling.  Some respond with “Well, most people probably have at least a little autism.”  Maybe they were trying to make me feel better, but autism isn’t the common cold.  I take my diagnosis as a life changing event; whereas, some seem to suggest it is a blimp on my life’s screen.  It is, too, a big deal!

I wonder if I hadn’t had ASD, would I have had some grandkids to spoil like so many of my peers have. I have a better understanding of why I don’t. So I will not ever known the pain or joy of childbirth or the birth of my child’s child. If I do down the path of “what might have been if I didn’t have ASD”, I am headed down a path with a depressing dead end.  I tell myself no one has it all.

Verbal instruction is hard for me to take in and process when given little time to complete the task. I now know why that is, but it doesn’t take away the challenge. When given me a list of verbal commands, my inner panic button goes off. I have to ask for a repeat because the sound of the panic button drowns out at least the second half of the instuctions.  If I act on it without questions or clarification, the odds of having heard it right are not in my favor.  When I get it wrong, I feel a crushing blow and it seemingly takes forever to get the memory of it to stop replaying in my mind.

Sensitivity to certain noises and lights are annoying.  I don’t mind hearing music as long as it is my music.  I don’t know why someone’s stereo in the other room or next door can make me feel like a cat whose tail got caught on a chair leg.

A meltdown doesn’t walk in.  It breaks in!  It can come from out of nowhere.  For me, it often breaks in at night.  I wake up and feel trapped in my bed.  The pillows and sheets are attacking my skin.  I get up and throw the pillows across the room.  I know what’s going on but my knowing doesn’t stop it.

The positive is there are ways to tackle the dark side. I’m thankful for the one dear “BFF” girlfriend I have. No big deal that I don’t have a host of girlfriends. When given a list of verbal instructions, I try to ask or repeat what I believe I heard the person say. I sleep with an eye mask to avoid the light of the digital clock and sleep to the sound of the air purifier to block out the noise of pitter and patter of feet or of my own heartbeat.  When invaded by a meltdown, I try to sit somewhere, take deep breaths and rock … and say a little prayer too until the storm passes.

It is both bright and dark living on the autism spectrum. That’s true as well for those not living on the spectrum. It is an old saying that one has to take the sour with the sweet. But oh, I am so thankful for the sweet.

My Struggle with Verbal Instruction

If you ever feel a sense of panic when given verbal instructions, you’re not alone! Whenever I’m asked to “will you please get whatever from the closet on the middle shelf to the right of whatever”, my immediate reaction is like a robot twirling around, waving its arms, yelling “Panic Alert!”

I often often find myself frustrated when given verbal instructions, whether at home, or in the workplace, or elsewhere.  I didn’t know why until I was recently diagnosed with Autism Spectrum Disorder (ASD).

This diagnosis prompted me to wonder if my long-held habit of asking for a repeat of what someone has said to me, particularly instructions, is related to my syndrome. Since my diagnosis, I have been doing research on ASD and learned verbal instruction is one of the things those with ASD struggle with. I don’t think it is so much of a lack of hearing that I ask for a repeat, but a need to be given more seconds to process what I am hearing.

An example of my trouble with verbal instruction was in a kindergarten class. While doing circle time, the teacher asked me to “get the phone”. I interpreted that to mean to go over to her landline phone at her desk and answer it. I was bewildered since I hadn’t heard the phone ring, but I thought, “Oh, well, my hearing isn’t what it used to be.” All I got was a dial tone.

I looked back at the teacher who pointed at her cell phone. I took that to mean it was her cell phone that needed answering. Again, I was puzzled since it wasn’t ringing either. I should have acted on my bewilderment and asked for clarity, but I was in panic mode. I picked it up and heard nothing.

That’s when the teacher told me her instruction of “getting the phone” was to simply go over to her cell phone, pick it up and hand it to her. Now if she had said, “hand me the cell phone”, I would have understood what she wanted.

I was humiliated! I wondered what the teacher must have thought. At least, what had happened went over the kinders’ heads. She probably would have received her cell phone sooner if she had asked one of them to “get the phone” since the children are probably more familiar with cell than landline phones.

My diagnosis has explained so much of how I think, feel, and act. Now when I think of that moment in the kinder class, I’m reminded of the words of a song, “Now I don’t feel so BAD!”