Phone Madness

I never in my teen years got grounded from using the phone.  Taking away my TV would have been torture but the loss of phone privileges?  It wouldn’t have hurt the least little bit.

Since I realized I was living on the spectrum, many truths about myself have seen the light of day.  Past moments over the years from childhood to present now make sense in light of my diagnosis. I see myself and my actions through a different light.

I am anxious on the phone because I struggle with verbal communication.  It is hard enough in person, but on the phone without the visual of the person’s face, it is even tougher.  I am an “ace” when it comes to written communication (e-mail).  People who are used to corresponding with me via email or via the post office might be surprised about this. On the phone and in person, the words don’t always come out right because I don’t have the luxury of time to process what I’m hearing and come up with an adequate response.

People are hard for me to hear over the phone.  Since I have the habit of asking people to repeat themselves in person in order to process what they have said, it is no surprise that over the phone is a bigger challenge.  At least with face-to-face communication, I have the visual of the person’s facial expressions and their hand gestures.  I miss a lot of details because my brain can’t keep up and doesn’t hear all the words.

People tend to talk faster on the phone and don’t appreciate my pausing to process their words and respond.  However, I need time to think before I speak; otherwise, my response will probably be one that I’ll kick myself over and over again, rehearsing what I should have said.  The entire thing is phone madness!

So if someone wants my best response, e-mail is your best shot!

 

 

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Challenges of Living with my Constant Companion – Autism Spectrum Disorder (ASD)

People in my personal space feels like someone poking a needle in my back.

I wish people would ask me about my interests; on the other hand, I don’t because I’ll be a like a wound-up toy that everyone in the room wants to turn off.

I keep getting distracted with thoughts I am distracted while trying to read three sentences’ worth.

My routine is not up for debate!

I’m protective as a mother hen over my stuff!  Sometimes I take the high road and share, but it doesn’t come easy.

I preferred the company of grown-ups when I was a kid; now I prefer the company of those under ten.

Being alone is as comfortable to me as wearing my favorite pair of sweats.

Knowing when to end a conversation is harder for me to pick up on than starting one.

Gripping the steering wheel on my way to a social gathering.

Sometimes I just need to stare out the window.

Keeping under control when someone interrupts me from pursuing my passion.

Communicating via e-mail is my strength; face-to-face is my weakness.

Losing all sense of direction when someone asks me on the spot for directions.

I call my constant companion “Autie” for short.  Autie never sleeps.

I can be quite social with one person I feel comfortable with.  At the max, two.  But add another person, I go silent.  Being with a group of people can be overwhelming.

I rehearse what I should have said in a situation that happened yesterday or decades ago.

Intense anxiety when my routine is interrupted.

I am far better at remembering my failures than my achievements; criticism than praise; awkward instead of my graceful moments.

I’m not fond of talking on the phone but I prefer it over talking to an answering machine.  The machine isn’t accepting of my monologs and it doesn’t let me erase what didn’t come out right which is most of what I said.

 

 

 

 

 

 

 

 

 

Keep off the Grass!

It was a gorgeous day and the coach decided to take all the classes outside for P.E. class.  I was the coach’s sidekick for the afternoon since the regular assistant had the day off.  The coach told the students they could NOT play on the grass.  It had rained hard the night before and the ground was still muddy.  She emphatically repeated her instruction to “keep off the grass!”

She had me take a couple of the classes out and stayed behind with some students.  No sooner had we arrived at the play area that some kids were in violation of the grass rule.  I yelled for them to get off the grass and they obliged.  I would continue repeating “keep off the grass” since one student after another opted for the grass instead of the sidewalk.

The coach and the rest of the kids joined us.  I welcomed having the coach to help me enforce the grass rule.  But I was disheartened instead.  The kids walking out with the coach sidestepped the sidewalk too.  I didn’t say a word!  Why?  Because the coach violated her own “Keep off the Grass” rule.

I thought of raising my hands in the air and yelling, “I give!”  Just a thought in my head.  I didn’t act it out.  HA!

I think this was another case of my taking instructions LITERALLY!  Shortly thereafter, a basketball went down the hill to where water was still standing on the grass.  The coach only allowed one to go down and rescue the ball and she told the others who were aiming to head down the hill to stay back.  Maybe the coach’s “keep off the grass” was keep off the grass where it was muddy.  That’s just a guess, though.

Growing Up on the Spectrum

It was sixth grade’s turn to do the fitness tests of curl-ups and push-ups.  I was subbing for the coach’s sidekick and monitoring the students who were waiting for their turn to curl and push.  It would have been impossible for me not to notice the skinny boy with long brown hair that hung down past his eyes.  He would every few minutes shake his head and then carefully go over his hair with his hand.  I was impressed with his performance of doing more curls and pushes than most of his peers.  I wondered if he was perhaps only shy or if he was somewhere on the spectrum too.

The kindergarten class was excited when the coach told them they would be going outside for P.E.  Not so much when they were told they would be walking laps around the cones on the field.  I walked with them thinking if they saw an “old” person do it, then surely they could do it too.  A “kinder” who is on the spectrum chose not to walk with the others but chose me instead.  Her talking up a storm relieved me of having to talk much.  I was briefed on her life story.  She lived with grandma during the week and with her parents only on weekends.  I asked if she liked living with grandma and she shook her head no.  She didn’t like the arrangement.  As she put it, it was “sad”.

The tax man cometh.  He had finished the paperwork and called Mom saying he’d be right over for her to sign so he could then file her taxes.  Her 58-year-old daughter made the excuse of going to her favorite store to do some window shopping.  She didn’t want to go through meeting a new person and do the introductions.  I’m still growing up on the spectrum.

Autism Pride

It was only months ago that a 12-year-old girl had a profound impact on my life.  She helped solve a big part of the mystery of why I act, feel, and think as I do.  She cannot utter my name or even her own.  I could tell her my story and its impact but even if she could understand what I was saying, she couldn’t carry on a conversation with me about it.

Occasionally, I get to see her and her classmates when I fill in for a teacher’s aide at her school. I recently helped out the P.E. coach who was without his sidekick.  The coach told me that the special ed teacher had a surprise for me.

She had a special gift.  It was a t-shirt with the words: “AUTISM AWARENESS accept-understand-love”.

At the time I was diagnosed, I had confided in this teacher and her aides about my diagnosis and how their student was the one who sort of brought me out of the closet.  Their student, in other words, was the lightning rod.  The staff was so supportive in those days and weeks after my diagnosis.  I was touched beyond words of being given this gift and they being the ones to give it to me.

I wasted no time!  I did a quick change at lunch and wore one of them with PRIDE! I subbed a few days later for this class and was told to wear one of the shirts. The teacher, her two aides, and myself were all decked out in our “Autism” shirts.

I intend for these shirts to get a lot of wear.  One reason is just for “awareness” to those I may cross paths with. Another is maybe it’ll help deliver the message to skeptics around me that this isn’t a phase I’m going through and that I’ll eventually get off my autism soap box. Or, my being on the autism spectrum is some foolish notion on my part.

I shouldn’t focus on the skepticism, but the support I received from people like this teacher and her staff.  I will cherish these shirts and the words written on front; and, most of all, the people in this story, including the 12-year-old who was the lighthouse to my finally arriving at the shore of my diagnosis.

 

There’s Just Something About Mary

The name Mary is a Hebrew baby name. The meanings of the name are listed as being: wished-for child, rebellion, or bitter.  I knew a Mary once and she was a wished-for friend.  If she ever felt rebellious or bitter, she deserved an Oscar for hiding it so well.  I can only picture the Mary I knew wearing a smile.  If someone were to ask me who was the sweetest person I ever met, my answer would be Mary without having to deliberate on it.

Social interaction doesn’t come easy for me.  I only learned months ago there was a name for my lack of social skills and other peculiarities; it’s called autism. But talking to Mary was different than with other people.  Somehow she made it easy for me.  I “wanted” to interact with her.  It never was an obligation.  Anytime we crossed paths, I knew our cup of conversation was going to be the highlight of my day.  It always was.

She has a certain way of listening that always made me feel as if what I was saying was valid.  At my attempts at humor, she laughed without my ever having to say, “That’s was the punchline.”  I could talk to her about anything and I probably told her more than she wanted to hear about my restricted list of subjects that I wouldn’t let die.  Patience must be one of her virtues since I tested it with my long monologs.

It is a blessing beyond measure to have someone you can be yourself with.  I wish she had been around when I learned I was on the autism spectrum.  I know she wouldn’t have said, “I for one am not surprised”; although, she probably wouldn’t have been surprised.  I’m sure she would have been so supportive by listening to me go on and on about it.

She had a New England accent and I had a southern.  I loved her accent and would have gladly traded but I don’t think she would have gone for that.  We were both never-marrieds; at least, up until the last time I saw her years ago.  Maybe a guy has swept her off her feet by now.  If so, he’s a very fortunate man.  I say that because she’s so good at caring.  There’s just not that many like her around.

There is just something about Mary.  I don’t have the word for it, but I know whatever it is, it is something very special.  When I moved away, I didn’t have the chance to tell her goodbye.  Maybe that was for the best since I hate goodbyes.  I miss her so much and if she’s reading this, I just want her to know that.  And, too, she’s unforgettable!

 

 

 

 

 

 

 

Challenges of Living with my Constant Companion of ASD

I wish I could turn my thinking cap OFF!

When I talk to myself, I am dishing out advice or making a speech that I’ll probably never give.

My first instinct when I see someone walking towards me is to veer off the path.

I have no problem being alone with “me, myself, and I”.  It is not easy being amidst a group for a short spell, but it is much harder for me to adapt when having a lack of “alone” time.

A bad nightmare is when forced to participate in group activities

Letting go of things is hard for most people, but for those living on the spectrum, it is beyond words.  We tend to obsess about things and rehash in our mind painful past occurrences making it hard to let go.

I’d like to read an entire page without a distracting thought — better make that a short paragraph.

When I’m in a structured environment, I feel calm.  When I’m in a fuzzy environment, I feel anxious.

When three or more are talking at once, their words just become static noise and I’m wishing I had wings of a dove to fly away.

When a certain sound frequency or volume feels like a knife piercing my ears.

I prefer to figure out how to do things or put things together on my own even though there’s an expert nearby or a phone call away.  Sometimes I will only ask for help when I am utterly desperate.

Dwelling on social errors I think I made.

Responding in a conversation is hard because I don’t have the luxury of time to process it.  Thus, my responses and what I would have said if I had a chance to do it over again haunts me.

When in sensory overload and the feel of the wind blowing on my face makes me want to explode and strike out against the wind as if I could.

Sitting still is so hard to do.

One Too Many Stations

I was hanging out in a school gym helping a coach and his sidekick.  My morning started with encountering a heavier than usual load of verbal instruction.  I do mean a “heavy” load!  If I had been my Mom’s laundry machine that’s been around for close to half a century, I would have been rocking with steam coming out of my ears.  When I am given instructions, I am on high alert!   There’s not anything I can do about that.  I’d get a new brain with new wiring but that would hurt my head.  HA!
The reason for emptying out practically half the storage closet was because it was “stations day”.  This is when kids are doing a variety of activities with hula hoops, balloons, jump ropes, bowling pins, etc.  The P.E. aide didn’t know he had on his hands a substitute aide with Autism Spectrum Disorder (ASD).  I would have told him since we’ve worked together several times over the past years, but I never had a quiet moment in the day to have that “talk”.  Besides, he was on a tight schedule and didn’t have time to write out instructions on the promethium board and draw a diagram to boot.
Any goof-ups where I didn’t get the ropes in the right corner or the bowling pins lined up just right would weigh on me since another trait of mine is having a huge guilt complex.  The P.E. assistant probably thought nothing of any mistakes since I wasn’t familiar with their set-up, but knowing that didn’t erase the tinge of “oh, no, I didn’t hear him right again”.
He showed me how to play “Just Dance” videos on the computer and I was doing fine until I accidentally chose one the played “Santa is Coming to Town”.  Well, Santa had already come to town two months earlier.  I was so nervous it took me at least a minute to switch from Santa Claus to Justin Bieber.
Then, there was a school-wide pep rally before the end of school.  The kids weren’t lacking in pep.  I, on the other hand, was!!!
By the time I got home, I could feel a meltdown coming on.  I managed to avoid this one.  I retreated to my bedroom, “stimmed” by rocking in a chair that wasn’t a rocking chair.  I did something relaxing which for me is writing.  Once my mind was channeled into my writing, I felt some relief from the sensory overload I had taken that day back at the school house with one too many stations.

My Recharging Place

It is a local lake park where I go at least once a week to recharge.  A place where I can step off the merry-go-round of the world around me.  It is a beautiful spot with a lake surrounded by trees with some ducks, squirrels, and geese as its residents.  It has fishing piers and a decorative water fountain in the middle of the lake.  I look forward to these visits where I can take a long walk and reflect upon whatever comes to mind while being amidst God’s creation.

I get a good bargain by going to my recharging place.  Three for one.  My physical body gets exercise, my mental gets some of the cobwebs cleared in my brain, and my spiritual gets prayer time and meditation.  My prayer time is just telling the Lord what He already knows such as the sweet and sour of the past week, the people whose paths I crossed and their stories, and what I can improve on (never a shortage on that).

Since I have been going there once a week for the last year or so, I am familiar at the sight of a few who are park regulars.  One of them is a silver-haired tall gentleman who walks with a cane and is always accompanied by his scottish terrier.  When I go to the park, I keep an eye out for him since he’s as much a familiar sight as the water fountain.

The last time I was there, I heard someone say “hello” and I turned and there he was using his cane to wave hello at me.  I waved and yelled hello back.  I felt warm inside that he had sought my attention.  It was good to see a familiar face in a familiar place.

Later, I saw him sitting on a park bench with his dog.  The urge in my heart was to walk over and speak to him.  My heart rate picked up speed as I weighed the pros and cons.  I came up with excuses such as he probably prefers to be by himself or I wouldn’t know what to say.  Usually, I buy into the excuses but not that day.  I took a chance and slowly made my way over to where he was sitting.

If he hadn’t been a familiar face, I wouldn’t have dared made the effort.  Not in a million years!  Just as I was getting close to his bench, I could hear him talking to his dog about the lack of squirrels wandering the park.  I chuckled inside thinking that talking to a dog was something I would do if I had one.  In fact, if the nice man had ever observed me walking, he knew I mumbled to only myself as I hiked along in the park.

Before I could get a word out, he spoke first which put me more at ease.  The conversation flowed as smoothly as the ripples in the lake.  I learned how he and his scottish terrier first met through his wife and how come he came to give his dog the name of Rudy.  We talked about the nice Texas warm weather and how we both knew what it was to live somewhere else where snow wasn’t unusual.  His cell phone rang and I took that as a signal to end the conversation.  Sometimes it isn’t knowing how to start a conversation that’s so hard; it is knowing how to end one.

I walked away with my batteries EXTRA charged.  I got a “bonus” in the park that day.  I accepted and took on a “social” challenge and achieved my goal.  I know striking up a conversation with a familiar face might be simple to a lot of folks, but not for me who lives on the autism spectrum.  It was more like a climb up Mount Everest.

 

 

 

Autism Madness

As with any job, I have my good and not so good days as a substitute teacher’s aide.  Sometimes the class is just having a challenging day.  The teacher and staff are terrific but some of the students are having issues that day.   Such as the day when I came home feeling like I had been at the Wild, Wild West where there was too many outlaws and not enough possee.

The youngest four students were the issues.  Two of them were allergic to the word “NO”.  When either was told that word, they would kick shins or run around the room trying to get away.  Another one of the four likes to say “NO” a lot.  And, “I don’t want to”, “shut up”, “you’re mean”, etc.  Then, there was the one who would climb as far as the ceiling would let him.

I worked with the older kids with their classwork.  Unlike the younger ones, they didn’t hide under the table or throw their papers across the room.  A 4th grade girl was golden in doing her work without complaint but the 5th grade boys complained that it was either too hard or too boring.  I didn’t argue; just stated it wasn’t up for discussion.  The ones who were griping did eventually finish.  They were inspired by the girl who finished first and got rewarded with an I-pad.

I had oodles of empathy for the students, including the littlest among them.  Like the students, I am living on the spectrum too.  I had my own struggles that day.  The noise in a nearby room was at times loud when one of the children screamed as loud as their voice would let them.  I wanted to put my hands over my ears and hide under the table myself.

To add to the madness, I had a conversation, well, more like, an attempted conversation with someone I assume is a neuro-typical (NT), not on the spectrum.  I enjoy talking to this person when our paths cross, but not when he changes the subject in mid-air.  He was good at asking questions that were about me.  Get me started about myself or my interest and I’ll run the ball with it.  However, he’d intercept every time I responded to his question.  I didn’t have the nerve to say let me run with the ball so I can make a touchdown (finish answering the question).

It took a double dose of ibuprofen and retreating after school to my igloo (bedroom) for recharging to get through my day of autism madness without going mad.