Suffering in Silence

She was a new kid on the block at a small school in rural America.  Her Grandpa took her to her 2nd grade class on the first day.  Mom was sick in the hospital.  She didn’t know with what but whatever it was, it was for a long haul.  A couple of months to be exact but to an 8 year old for whom routine was paramount, a day was too long.

She missed her teacher back home who had tears in her eyes as she walked out of the class with her Dad.  Her new teacher wasn’t as forthcoming with affection.  It would have helped if another student had taken her under their wing, but there were no volunteers.  She kept the pain of the unfamiliar hidden from her grandparents.  She suffered in silence.

Her little brother got a hold of one of her schoolbooks and wrote in it.  A student sitting next to her saw the marking and threatened to tell the teacher.  She was frightened at the prospect of being scolded by the teacher.  She’d do anything to keep that from happening.  The other student obliged by granting her silence in return for her forking over some of her packed lunch every day, especially the dessert.  She kept up her end of the deal and lived on half a meal.  She did not tell anyone about the blackmail.  Not even her grandparents.  She suffered in silence.

Her Mom got out of the hospital near the end of the school year.  On her last day, the blackmailing student broke her hair clasp.  Someone told the teacher and the student was punished and humiliated.  The student whispered that she was going to tell the teacher about the book.  By that time, her Grandpa had arrived to take her home.  She walked away not knowing if her blackmailer did what she threatened to carry out or not.

Once she was in the bathroom and got up too close to her grandparent’s heater.  She suffered a burn that was oddly in the shape of a flame on the back of one of her legs.  It hurt pretty bad as one can imagine.  But she stifled the scream she wanted to let out.  She hid her burn with wearing long pants.  She feared once again of being scolded.  Common sense would have said that Grandma would have had compassion on her and put something on the burn.  But instead, she suffered in silence.

Some weeks later, her Uncle took her for a piggyback ride on his horse.  It was during the ride that her blister burst.  Grandma noticed it and asked what had happened.  She confessed about getting too close to the heater.  She didn’t get in trouble for not telling, but she did bewilder the grown-ups as she often did.

The young girl is edging up close to 60 years of age.  She learned only recently there’s a name for her odd pecularities.  It is called autism.

Now I know why I suffer in silence.

 

 

My Invisible Companion

I suppose I will not forget the 12 year old girl who months ago who caused me to suspect I was living on the autism spectrum.  Her creation of a world of her own making, seemingly talking to herself, at times pacing the floor, was the behavior that mirrored my own.  Unlike her, I was more selective of where I paced and talked to my imaginary characters.  She is on one end of the spectrum and I on the other, but it is the same spectrum.

I’ve lived with Autism all my life, but I didn’t know its name until after the 12 year old and I crossed paths.  Now that we’ve been formally introduced, I am aware that it doesn’t leave my side.  I recognize it playing its invisible role as I go about the business of living.  It is my constant companion and it is invisible to those around me.

I am sitting in a church classroom.   I am a first time visitor.  It was no small task for me to come into the room where there was no familiar face.  The people seem nice enough though.  But the hour is up.  It is time to leave but the teacher isn’t done yet.  Her talking becomes static noise.  I stifle my impulse to leave.  I imitate the “proper” behavior of those around me.  I want to “stim” – rock back and forth, boggle my knees, pace the floor – but that would draw unwanted attention.  Finally, she’s done and the class is over.  I head out the door breathing a tremendous sigh of relief.

I’ve played this scene countless times.  My symptoms are for the most part invisible.  The turbulent storm with its pouring rain, lightning streaks, and thunder claps are all inside of me.  I don’t announce to the group I’d rather flee than to continue pretending I am fully engaged.  I try to stifle the impulse to stim.  I work hard at pretending to be “normal” until I can get to that safe zone where I can take the mask off.

I sometimes work in a special education classroom with children like the 12 year old.  Their symptoms are visible.  Their parents yearn to hear their child say “Mom” or “Dad”.   Just any word would be a monumental milestone.  The children are oblivious to their constant companion.  They can stim to their utter delight and be oblivious to the so-called “normal” people around them.

It is different for me because I’m on the other end of the spectrum.  As far as I know, I learned to talk on the same schedule as my peers.  I did well in school grade-wise.  Since I wasn’t graded on my social interaction skills, that never came up.  Some of my teachers might have suspected something but not enough of a something to warrant seeking a diagnosis of whatever that something was.

I suspect there are a lot of folks out there who are living on the spectrum who don’t know they are.  It took me 58 years, the right job as a special education aide, and a 12 year old to introduce me to my lifelong companion who is no longer invisible to me.

 

 

 

 

Help From Out of Nowhere

It was Independence Day in 1992 in the nation’s capital city.  I had survived my first year after moving halfway across the country the previous summer. My survival was no small feat either!  I had been tempted more than once that year to come up with an escape route.

I debated that day about seeing the spectacular fire works show at the National Monument.  I had seen such gatherings on television back at home.  I knew there would be a tremendous crowd with accompanying long lines of traffic which is a nightmare to one on the spectrum, but this was decades before I knew I was on the spectrum or even what the spectrum was.

I decided against by better judgment to take the risk in order to see the nation’s fireworks in its capitol city and film it all on my video camera.  I was doing fine until I got to Potomac Park located across from the Monument.  My Chevy Cavalier decided then and there to call it quits.  Unknown to me, the battery and alternator passed away together.  My Chevy and I were stopping a long line of traffic stacked up as far as the eye could see.  I wasn’t worried about them though.  I was focused on my dead Chevy.

I don’t know whether the two uniformed police officers on horseback were with the Capitol Hill police or the local D.C. police force, but they were not my knights in shining armor.  I was expecting help from them, but their help consisted of telling me how much traffic I had backed up which wasn’t news to me.  Well, it wasn’t my idea for my Chevy to have a breakdown.  I was feeling close to having one myself.

The officers also told me they tell people every year to stay home and watch it on TV.  Maybe they lived in the area all their lives instead of halfway across the country and simply did not understand.  They went on their way leaving me behind.

As I was sitting in my car, occasionally looking up at my rear view mirror at the line of drivers who were probably thinking no kind thoughts towards me, I thought to myself, “Lord, if you want to take me now, I wouldn’t mind so much.”  I can laugh about that now but it wasn’t funny at the moment.

My knight in shining armor seemingly came out of nowhere.  He was an Army officer from Ft. Belvoir which was located just beyond the Virginia side of the Potomac River.  He and his teenage daughter were at the park along with their friends.  He saw me in distress and came over to help.  He directed him and his friends to get my car out of the way of traffic.  He invited me to spend the fireworks show with them.  I couldn’t turn down the invitation since my Chevy wasn’t going anywhere.

My hero that night told me he and his friends had made it an annual tradition to see the fireworks show at the same spot in the park.  They arrive early in the day to claim that spot.  I can’t prove this, but I believe it was not a matter of luck that my Chevy died near that spot.  The Lord provided my knight in shining armor.

I called Triple A from a phone booth at the park.  This was way back when they had such things as booths.  They were not coming to help until the following morning.  I understood since it would have probably taken them until the wee hours of the morning to get to the park with thousands about to make their way out of the park after the last firework was lit.  The officer assured me that he would not leave me.  When the show was over, he and his daughter took me home.

As we were heading across the Potomac River back into Virginia, we talked about the news of the day which back then was the Los Angeles riots after four L.A. police officers were acquitted in the beating of Rodney King.  He told me when he saw me, it didn’t matter I didn’t have the same color of skin as him.  He saw me as a fellow human being who needed a helping hand.  He followed the conviction on his heart to be that hand.

I was expecting help from the uniformed officers on horseback, at least, something more than telling me how much traffic was behind me.  Instead, it came from someone who wasn’t obligated in any way to help me.  I offered him money for helping me, but he didn’t take a cent.  He had his reward in his heart.

 

 

 

 

 

Just How Old is Old

If you want to know what “old” is, don’t ask the ones who have had fewer birthdays. Your best bet is to ask a centenarian.

A few years ago, I was subbing as a teacher’s aide in a special education class for those students on the autistic spectrum.  One of the boys asked me, “How old are you?”  I don’t know when it was that I stopped liking that question, but the time has long since passed.  Since my responses tend to be awkward, especially when put on the spot, I blurted something about it wise not to ask a woman her age.

He didn’t take my answer lying down.  He asked, “Can I guess your age then?”  I will never cease to be amazed as to what will come out of the mouth of a child.  With hindsight, I sure gave him the wrong answer by saying “Yes”.

His answer had me minutes later looking in the bathroom mirror asking myself, “Do I really look ten years older?”

 

 

 

Autism Minefield – the Marketpace

A man at the grocery store was unknowingly blocking access to the shelf item I had my eye on.   Common sense would dictate if I told him, “Excuse me”, he would have moved an inch to let me reach for it.  But instead, I pretended to browse the shelves with the back of my eye on him.  It appeared he was thoroughly reading the label on the item.  I secretly hoped he’d take the item and not reach for another and here we’d go again with the label analysis.  Just as I was about to give up and go roam another aisle, he moved a few inches and I went in for the take.

As strange as this sounds, I have to really ache for the item before I would succumb to asking a fellow customer to move ever so slightly. In fact, “excuse me” is a trigger phrase.  When someone says it to me, I always move out of their way without complaint.  I just wish I could pull a plug on the uneasy feeling of having been caught in someone’s path.

My diagnosis of being on the autism spectrum a little over a month ago has prompted me to re-evaluate past life episodes and  how they may relate to my autism.  But not only the past, but as I go about the business of living today.  It is like seeing the world around me with a different pair of lens.

From the research I’ve done on autism, I understand why public places can be a minefield. Autism doesn’t stay in the car when I go inside to shop.

If I arrive in a parking lot where looking for an empty space is like going on a safari hunt, I will not bother stopping.  If moving the shopping cart is like going through a maze with little space to maneuver in with lots of noise in the background, I’ll only endure it if what I came for is essential.  Otherwise I’ll find my nearest escape route.

The checkout has its own boobie traps.  Such as the clerk scanning an item and the price is not in sync with my expectation.  The price has to be high enough and I have to be absolutely sure the price scanned is the wrong price before I’ll speak up.  If I have any doubts or it’s a small difference in change, I will pay the price without question.  Common sense would say the clerk isn’t going to reach across the counter and strangle me for questioning the price, but that’s the dark side of living on the spectrum.  Social interaction, whether it be at home, work, marketplace, etc. is just hard.

Returning an item to the store may be just a burdensome task to some, but for me, it is an enormous task that I have seldom pulled off.  A store’s customer service desk seldom sees the likes of me.

There was a rare occasion only recently where I showed up at the return/exchange desk of my local electronics store.  I was anxious as I made my way to the counter, but I stayed on course and got an exchange.  Ironically, it was an obsession, a common autism trait, that pushed me to the counter that day.  I have an obsession with computers and other electronic gadgets.  How bad is this obsession?  Honestly, I don’t know what I would do without power strips.  I’m a “mother hen” when it comes to my electronic gadgets.  I was willing to endure going to the customer service desk because I wasn’t about to tolerate having a newly bought “lemon” tablet.

I have a vague childhood memory of being in the store with my Mom.  I was pacing the aisle and acting out an imaginary story playing in my head.  My Mom noticed and said, “Stop doing that.”  Some five decades later, I know what the name of “that” was.

Sometimes I still retreat into daydream land when I’m in the marketplace and reality is a crowded store with noise galore.

 

 

 

 

 

Social Interaction Deficit

It is well-documented those with Autism Spectrum Disorder are not likely to be the social bufferlies in their community. Social awkwardness is one of the symptoms I can claim hands down.   Unlike my dear friends who are social butterflies, I could manage to go days in solitary confinement without going mad. But if I was forced to be among people around the clock, with no break of lone time, I would probably have a meltdown by the stroke of midnight.

“Group” is a word I’m allergic to.  It can be followed by the words “meeting” or “social” and I will have the same reaction. It is similar to the reaction I have at the smell of turnips cooking, or the bass sound of a loud stereo, or the glare of the bright lights.  I’d rather be sitting on the roof than sitting inside at a group gathering pretending to listen while hoping someone will volunteer to be the first to leave.

The other day I was screening my list of 66 Facebook (FB) friends. That may seem like a lot of social contacts for someone who claims to have a social interaction deficit. Well, when I compare 66 to those FB friends who are social butterflies, I come up awfully short. I’m not complaining that I don’t have 700 more or less friends. Goodness no! It’s just an observation on my part because one of the things I don’t have a deficit of is “analyzing” statistics. Another common autism trait, by the way, is an attraction for numbers.

I know two sisters who are in competition when it comes to number of FB friends. They are trying to outdo each other. They are long retired and have the time to solicit friends on FB. When their birthdays come up, they will respond to every single birthday greeting. The last time I checked, one sister had 502 and the other had 511. It takes up a good bit of their birthday time to reach their goal of responding to each “Happy Birthday” greeting they receive, but they enjoy it. I also make a point of responding to all my birthday wishes but it’s not as an enormous task as it is for the sisters.  Sometimes a social interaction deficit has its benefits.

 

 

Not a Spectrum Tourist

I remember the moment of observing a 12 year old child pace the floor, talking in language only she could understand, and at times, leaping with excitement.  Her behavior was typical for her.  The staff wasn’t surprised by it since they had seen the child do this more times than they could count  However, they did wonder what was going on inside the child’s mind.

Her behavior was “normal” to me because I did the pacing and make-believing too.  I still sometimes do.  I just try not to do it in the public eye and I don’t leap anymore since my hips aren’t as young as they used to be.  Although I couldn’t make out what she was saying to herself, I knew possibly a story with a cast of characters and dialogue was unfolding in her mind.

This moment was the beginning of my journey to a diagnosis of autism.  Now that it has been almost two months, the newness of it is wearing thin and the sinking of it is settling in.

It has started hitting me that I am not a tourist on the autism spectrum.  This diagnosis didn’t just drop in and pay me a visit.  Instead, I learned the name of my companion I’ve unknowingly had from birth and will have until death.

On the job, my companion is constantly raising its head.  I’m in the gym subbing for the P.E. aide.  The sound of the children trying to raise their voices over another is sensory overload.  I need to stim and I find a way to do that without attracting attention.  The coach plays music while the kids play the games.  The coach remarked I must like Michael Jackson’s music because I was swaying and stepping to it.  I nodded “yes”, but the truth was, I was secretly “stimming”.  Michael’s music provided me cover.

The mystery used to be why I was not in step with my companions.  Now that I know why I am different, I have another mystery.  What’s it like to be neurotypical?  Or, in other words, to live off the spectrum?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Scrubbing out of Love

This story is about something I know little about.  I am essentially typing a story someone wrote me in a letter.  It’s a story about a moment in a young lady’s life that I had never experienced myself or anything close to it.

My experience of living on the spectrum is to avoid such experiences, but yet inside there is a curiosity of what it feels like it.  It’s like looking at an object from a distance and wanting to go over and hold it, maybe even keep it; but the fear of it is too overwhelming.

This is a romantic love story.  It lacks the drama of a romantic novel or film.  But to the young lady for whom is the star of this story, it was a moment that five or so decades later she’d write her grandniece a letter telling this story.

Shortly before she married her true love, Edgar (Ed for short), she made an odd request to her mother Mary.  She asked her mother if she would have everyone leave the house for a while.  Mary was clueless as to why, but perhaps out of sheer curiosity, she granted her daughter’s request.

While everyone was out of the house, she scrubbed that house from top to bottom.  Then, she did her very best to cook the best meal she had ever cooked.  She used the best plates and silverware in the kitchen.  She set up the table as if she was serving royalty.  After she was satisifed she had done her very best, she had them all come in.

Everyone was surprised.  No one was more surprised than Ed and Mary.  They all sat down to this feast they were not expecting.  Ed took a few bites and said to Mary, “I thought you told me your daughter couldn’t cook.”  Mary said, “I didn’t know she could!”  The young lady said, “Mom, I have been watching you all these years.  I just did what I saw you do.”

There is more than one way to tell someone you love them.  That’s a good thing for us living on the spectrum.  The words, “I love you”, don’t fall off my mouth easy-like.  Besides, those words fall on deaf ears if actions don’t back them up.  Despite my severe drought of the romantic kind of love, I could figure out that the young lady, my Great Aunt Annie, didn’t scrub the house because it really needed scrubbing.  She didn’t cook to feed the household, It was an act of love for my Great Uncle Ed.

Annie and Ed are in heaven now.  I’d like to think she is taking walks with her true love on the streets of gold.  A place where there is no need for scrubbing.

I also believe her older brother, Charlie, is around too.  I don’t know how it works in Heaven, but if she did tell Charlie about having a pen pal, he’d be glad his oldest grandchild was the one.  I can’t recall ever saying the words “I love you” to my Grandpa Charlie. However, just as Annie honored Ed by scrubbing, I honored my Grandpa by writing letters to his little sister in hopes of making her laugh in her later years.

 

 

 

My Heart’s GPS

I am a devoted Toyota Prius owner.  By how much?  I’m on my 4th or 5th one.  I don’t remember which.  Maybe I have a “Pree” obsession to add to my obsession list.  If you’re not a Prius, or for that matter, a Toyota fan, never mind.  This isn’t an essay advocating Toyota Prius ownership.  I do like the Priuses though.

It was my first Prius that introduced me to the GPS.  I forget what GPS stands for but it replaces my MAP.  I haven’t used one of those roll-it-up things since.  It’s not that I had trouble reading a map, or minded all that much rolling one back up, it’s just that I’m electronically minded.  I love gadgets and if they can do something useful, well, even better.

It is helpful on the job because I’m a substitute teacher’s assistant.  I usually go to a different school each day.  Occasionally, I go to a school on the end of town I don’t know like the back of my head.  I plug in the address and have no anxiety, well, hardly any, that I will land at the school.  If I do have a problem, it’ll be because I made a wrong turn, or missed a turn, or passed right by it.  I’d like to blame my GPS when I had to make a u-turn, but I’d only be kidding myself.

My GPS has a female voice.  She tells me directions as I am on the way.  If a turn is coming up, she’ll let me know in advance of whether it’ll be a right or left turn.  If I’m on the freeway, she’ll let me know in advance of the exit I need to take.  It is useful to know ahead of time when you need to move over to the left or right.  That’s especially true when you’re sharing the road with drivers who drive as if the road has their name on it.

It’s hard to get lost with a GPS provided I’m paying attention and following directions.  But if I get distracted or confused and miss a turn or exit or go down the wrong street, my GPS will not give up on me.  Whether I make one mistake or several, she won’t call it a day.  My GPS will instruct me to make a u-turn or if I really get way off the path, it’ll re-calculate my route.

The only way my GPS can’t help me is if I ignore her directions or even turn her off.  I might know the way by myself, but then again, I might not.

I have another GPS but it isn’t in my car or house.  It’s in my heart where God’s Holy Spirit abides.  There’s not a single day the Spirit is silent.  I’m not forced to listen to it any more than I’m forced to listen to my GPS.  If I listen and follow the directions, I’ll be where I need to be, meet who I need to meet, and say what I need to say on any given day.  If I don’t listen, I’ll be more lost than when I don’t listen to my GPS.

I remember a trip going from my hometown of Dallas to Washington D.C. where I was living at the time.  While I was just heading into Nashville city limits on the interstate, my GPS told me to take an exit.  I thought that was weird but I did it.  I found myself seeing more of Nashville than I expected to.  I was driving by neighborhood streets, schools, local businesses, etc.  Then, I took a turn as directed and I was on a road headed straight for downtown Nashville.

Nashville!  Yikes!  I wondered if my GPS had malfunctioned.  What was she thinking?  I had plugged in my destination as being D.C.; not Nashville!   However, I stayed on course.  I didn’t deviate even though I had my doubts.  Just before I was about to enter the skyscrapers, my GPS told me to take a right turn.  I did so and found myself seconds later back on the Interstate.  I thought, “How could I ever doubt my GPS.  She hasn’t let me down yet.”

I should think the same about the GPS in my heart.  When has it ever led me down a path to a dead end?  Not yet.