A Crowded Nightmare

The nightmare happened on a day near the end of the school year for a 6th-grade boy with autism. There was something different going on at school that day. A break from their regular routine to attend a gym competition. For him, any change in routine, good or bad, can be another nightmare.

The competition was among the older grades. I was taking part by helping the coach take score. I noticed him coming in with panic written all over his face. He looked around as if he had stepped out of a car and found himself in a far away place. His world had been thrown off kilter. I felt empathy because I had been in a similar boat many times.  Routine is essential to me too.  I just have coping skills he doesn’t have.  I don’t think it was just the crowd, but the hustle and bustle of basketball shooting, frisbee throwing, and relay racing. There were whistles blowing and kids roaring with boos and applause.

The teacher aide recognized he was in sensory overload. She had him sit down with some of his classmates who were taking all the commotion in stride.  In no less than a minute, he got up and stepped out on the gym floor spinning in circles. He made an indescribable sound but a familiar one to those in his inner circle. This is his own unique distress call when he is potentially in meltdown country.  When he almost ran into a student who wasn’t steady on her feet, the teacher brought him back to the sidelines. He sat there for maybe five minutes. That was as long as he could take before getting back up and spinning once again on the floor.

This time the aide brought him back but she sat down on the floor with him. She gently rubbed his arms and hands to soothe and reassure him it was okay. Her idea worked and he calmed down enough to remain seated.

Although he could pass for a high school football player, he is a gentle soul. Even in meltdowns if he physically hurts anybody, it is himself.  After the last contest, she had no problem whatsoever getting him to go back to the classroom. He was the first one in line as his class walked back.  He was more than ready to return to the familiar place and resume the routine. His crowded nightmare, at least the one that day, was over.

My Dear Cube

I can click on it as if it was a pen.  I can glide on it as if it was a joystick.  I can flip on it as if it were a light switch.  I can roll on it as if it were a combination lock.  I can rub on it as if it were a rubber ducky.  It is my fidget cube.

It is the newest gadget to my growing herd of gadgets.  Some people on the spectrum collect stamps, rock, calendars, etc.; I collect gadgets.  One of my favorite stores is the utopia of gadget merchandise:  “As Seen on TV”.  Most of their products I haven’t seen on TV but that’s beside the point.  Some gadgets are practical and some are strictly for fun.  My newest gadget is a fidget cube that is both a toy and a practical tool for my autistic need to fidget to focus.

My first sighting of this cube was a Facebook (FB) ad.  I don’t usually pay attention to ads on (FB) any more than I do on the TV tube, but this ad caught my eye because it claimed to be helpful to those with Attention Deficit Hyperactivity Disorder (ADHD) and Autism.  Since I’m on the spectrum and I do fidget, I clicked on the picture to learn more about this cube.  I got hooked, lined, and sinkered into ordering one from Amazon.  I was dismayed that it took an entire month before I’d get my hands on one.  It was like back in the day when I waited for Santa.

The cube is selling like hot cakes along with its cousin, the fidget spinner.  My grandniece introduced me to the spinner and she wouldn’t sell it to me. HA! So I had to continue to wait for the cube.

Its ad claimed a total of six sensory tools on all its six sides: an on/off- switch resembling a light switch, gears, a rolling ball, a small joystick, a spinning disc, a rubbing pad, and depressible buttons.  All of these fidgeting options on one cube!  Since it can easily fit in my pocket, I can twiddle with the cube without public knowledge.

I have had the cube a few months now.  It has lived up to its billing in the FB ad.  I keep it with me pretty much all the time except I don’t take it to bed with me.  I take it to school with me and fidget as needed in my pocket.  It helps keep me cool, calm and collected when in the midst of chaos such as in the school gym/playground where 30-something or more sets of lungs or going off.

When I go for walks or jog in place, I take it along and click on its buttons creating a rhythm to step or jog to.  Or, use it to count steps as I’m walking or jogging.  While I am at a desk in writing mode, I will fiddle with the cube when needing a “brain break.”

I never thought I’d be attached to a cube but that’s the kick about life.  It has its surprises.  Sometimes those surprises come in small packages.  With living on the autism spectrum, I’m open-minded to any gadget or app that can lighten the sensory load.  With all the options on the cube, I just may give up my other fidgeting activities such as stretching a rubber band, playing with a paper clip or biting my fingernails.

 

 

 

Spectrum Challenges

Below are some of my challenges I have lived with but didn’t know what was behind them until learning Autism Spectrum Disorder (ASD) wasn’t something only someone else had.  I found out I was on the spectrum near the end of 2016.  This challenging list doesn’t apply to all with ASD because when you’ve met one person with Autism, you’ve met only one.

Rules are not mere suggestions to me.  I welcome and need them.  In an unstructured environment, I feel as uneasy as a polar bear would on a beach.

Routine is almost as essential as air.  I guess it has to do with feeling safe and secure in the world.  I do change my routine occasionally, but if it is beyond my control, a change in routine can put me in meltdown country.

Stuck with no means of a graceful escape to hearing music that is pushing all my buttons.  I don’t dare complain to the one playing the music, much less scream or cry because it would draw unwanted attention.  I must, as I often have to do, pretend I’m just fine while boiling underneath.

It takes me longer to respond to someone.  I need time to process what has been said in order to come up with a response.  More often than not, I ask for a repeat to give me a few more seconds even though I may have heard them the first time.

I love hardball conversations about any one of my limited interests.  Social chit-chat is hard for me to sit through.  I often manage by drifting into daydream land if I can’t make a graceful exit.

It is stressful for me to be as busy as a bee or to be bored out of my skull.  I love a schedule with the consistent rhythm of one thing after another instead of things happening all at once or nothing happening at all. 

Physically and mentally, I’m years passed the half-century mark.  Emotionally, though, I am about the same age as the elementary students I work with. I’m reminded of that when I’m behind the steering wheel stuck in traffic.  Even though it isn’t the steering wheel’s fault, it is what I take it out on.

I don’t like it being pointed out in a group I am the quiet one.  I’ve been a quiet person for more or less fifty years and so it isn’t news to me.  

Timekeeping to me is crucial.  If it is going to be around noon that someone will show up, I’d rather they say “noon-ish”; please not say noon if one won’t be there before or on the dot.

Highly sensitive!  Such as when a check-out cashier says she’s not open.  I will beat myself for not noticing the sign that she was closed.

Groups are my nightmares.  I always seem to be the square peg in the group of round pegs.  I don’t know if I’m more afraid of being spoken to or not at all.  

I don’t write about my ASD to complain or seek sympathy; I write to offer empathy to those on the spectrum and to provide knowledge and understanding for those who aren’t.

I have a choice about reading about Autism Spectrum Disorder (ASD) or talking about it or writing about it.  I don’t have a choice about living with it.

 

 

Tablet Meltdown

It was a relaxing afternoon since Fridays are most welcomed by school students and staff alike, more so the staff I suspect.  I was subbing in a special ed class.  The youngest of seven students was a kindergartener who was quite a pickle, but cute as a button.

Like so many little and big kids, she takes a fancy to the tablet.  She knows how to use her fingers to switch from one view to the other and with one finger touch the icon that suits her fancy.  She knows what button to push to pull back up the home screen.  We didn’t hear a peep out of her until she let out a scream.  She was giving the tablet a talking to with a face that could kill.

The teacher and the regular aide did the right thing in admonishing her to use her voice and ask for help instead of throwing a tantrum.  It is a message she has to be told each time it happens.  I think that day it happened about a half dozen times.

I whispered to the teacher that there were many a time I wanted to do the exact same thing.  In my private moments, I have thought or spoken a few choice words to my tablet, desktop, laptop, or other devices.  I couldn’t tell the kinder I had done what she did since I didn’t want to discourage her from following the teacher’s instructions.

The teacher chuckled since she knew what I meant.  Most any of us have wanted to scream at a device that has gone haywire.  Such as tossing whatever out the window.  Most of us don’t because we’d have to pay for it and the window both.  Even worse, when it isn’t our device or our window.

The regular aide was asking me how I had been doing since my autism diagnosis.  I told her about my meltdowns and how I went about coping with them without damaging property.  She said, “At least, you know what they are and have coping skills.  These children don’t yet.”  She had a good point.  Those who occupy a different spot on the spectrum who can’t communicate what is going on suffer tremendously.  They don’t know what to do about it other than scream, kick, cry, etc.

There was one moment when she was playing on the carpet. We don’t know what went wrong but she started screaming again.  But this time, she was rocking back and forth on her knees.  Now that I relate to since I rock too when I want to scream.  And I admit there have been times I have screamed at my tablet.

 

 

 

 

Meltdown Degrees

My meltdowns are at varying degrees.  One can be in the 30’s (a short upset), in the 60’s (a longer teary-eyed fit), or in the 90’s (when hopefully the only thing I’ll throw around the room is a pillow).

My foremost coping skill is a talk with Jesus.  Just telling him whatever is going on inside of me is the best place to start conquering the meltdown.  Oh, I could talk to someone which is not bad advice, but I seldom take that option.  It carries the risk of the person advising me to calm down.  Telling me to do such when I’m in meltdown country is like holding a red flag in front of a bull.

Sometimes I walk into situations where the odds of having a meltdown increase tremendously.  Such as going to the $1.00 store a few days before Easter.  That was a bad idea.

Easter decorations were flying off the shelf.  I don’t like to shop anywhere where there’s a crowd.  However, since I needed some items in that store at the affordable price of a dollar, I took the meltdown risk.  I’m a miser at heart too.

There wasn’t that big of a line when I walked in, but it seemed like when I went to get in line, there had been a cattle call to get in line.  I stood waiting while three ladies who were together separately purchased oodles of Easter bunnies, baskets, eggs, etc.  Now I knew, rationally speaking, they had every right as I did to be there.  But sitting through their purchases raised my odds of a meltdown.

Before I got out of the parking lot, I had to wait for cars to slowly, and I do mean slowly, back out of their parking space.  That’s what one should do when backing out, but I wasn’t thinking rationally at that point.  I started having one of those short meltdowns.  No tears but tension running throughout my body.  My steering wheel got a beating.  I shouldn’t have been driving but it was too far to walk home.

My next stop was what I call my “toy store”, Best Buy!  It was on my official “Saturday Morning Shopping Plan” that was written in my mind before I embarked.  It is my favorite store because I possess a common “autism” trait of collecting things and what I collect is in that store.

While browsing inside my “utopia”,  the crisis passed.  My anxiety level shifted downward.  I came home feeling extra tired because a meltdown, even a short one, can be draining.  There won’t always be a Best Buy around when I need one, but on that day, I coped as best I could at Best.

 

 

 

 

 

 

 

 

 

Tire Meltdown

It is a member of my Prius’s (aka Pree) dashboard warning icons.  I am most familiar with it than others because it pops up more often.  That’s a good thing since I’d rather have a low tire pressure warning light than one warning of a meltdown of my car’s engine.  Any warning icon is an eyesore, though.  With me, on the spectrum, a warning icon can bring on a meltdown.  I’ll overreact with a tight grip on the steering wheel and every muscle in my body on full alert.  It isn’t the end of the world for the tire light to come on, but my brain registers it as coming awfully close to it.

When this happened some months ago, my anxiety hit the roof.  I had to get it taken care of immediately!  I mean STAT!  I was afraid to continue driving Pree. I wanted to get to a tire place to erase the icon staring straight at me.  It was early that morning and fortunately, a tire place a few miles away was open.  I caught them at a quiet time with no waiting.  Pree’s rear shoes needed some airing and it was promptly taken care of.

After getting back on the road to where I was headed, I breathed many sighs of relief.  I would be drained for hours coming down from a full panic alert.  When I felt better, I thought to look up on YouTube how to check the air on a tire and how to air a tire up with an inflator.  I knew this icon would come on again and I wanted to stop having a panic attack over it.  The video of watching someone go through the motions was easier to follow versus reading an instruction manual.  The video inspired me to go on an adventure into an auto parts store and purchase an inflator that fit my budget.

Months later, the yellow icon eyesore came on, but I didn’t grab onto the steering wheel for dear life.  I was armed with a tire inflator.  The YouTube video was replaying in my mind as I got the inflator out from the trunk.  I had NO problem finding which tires were low and aired them up according to my car manual’s tire specifications.  When I turned Pree back on, the eyesore disappeared from my dashboard.  A meltdown had been averted!

I still am not looking forward to seeing that icon on my dashboard, but I have something I didn’t have before.  A tire inflator and the know-how.  If there is a lesson in this story, my guess would be — knowledge is power.

 

 

Living on the Spectrum

Words that light up my panic button:  CHANGE OF PLANS

Need help finding something on the store shelf?  Only if living without that something is a more frightening prospect than asking a total stranger for help.

Never a day without one too many cringing pop-ups of embarrassing or painful memories I would delete if only I could.

I keep something in my pocket to fidget with to keep my hands busy.  Or, I bite my nails.

I’m open to spontaneity with just one condition:  it has to be my idea.  It is rather unthinkable to go along with someone else’s.

Sometimes I ask myself, “How am I feeling?”, and I don’t have a clue.

Frustrating when I think of a thought to share, people keep talking, and the time to share it has passed.

Little things such as calling for an appointment or asking a question isn’t little to me.

Wanting to disappear when someone brings it to the group’s attention that I am the quiet one.

I crave specifics; don’t cater to abstracts.

I will play games provided the other player(s) are under 10.

The fact that something bothers me bothers me too.

 

I edit in my mind my on-the-spot blurred response to a question I was asked days or weeks ago.

Just because my mouth isn’t at work doesn’t mean my brain is too.

 

 

 

 

 

 

 

 

 

 

Meltdown Fatique

My meltdown began with music coming from a computer.  I was well within earshot.  Even if my life depended on it, I couldn’t explain why the sound of someone singing on a video triggered a magnitude of agony.   I don’t know if there are words to describe this meltdown; if there are, I don’t know them.

I left the area to an adjoining room but I could still hear the sound.  I didn’t know what was being sung on the video and why it triggered an eruption in my soul.  I could not tell someone to turn the volume down or turn it off.  That would not have been socially acceptable.

I was alone so I curled up in a fetal position, held my hands over my ear, bounced my leg up and down, and silently sobbed.  What seemed longer than a few minutes, I went elsewhere to pace the floor in another empty room.  When I was certain the music was off, I could start breathing again as if I had been sinking and was able to come back up for air.

The meltdown left me utterly exhausted!  I sat down and rocked for comfort.  Before my diagnosis a few months ago, I wouldn’t have known it was a meltdown.  Just me acting crazy.  I wouldn’t have known my rocking and pacing was “stimming” and how such is essential during and after meltdowns.  Such repetitive behavior is the insulation from a meltdown’s cold and cruel wind that sometimes blows in from seemingly out of nowhere.

 

 

 

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 everthe nice man had observed me up close, 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.

 

 

 

Breathe

My meltdown started with the voice mail symbol on my cellphone.  This symbol will push my inner panic button every time.  Fear and anxiety are predominant emotions in my living on the spectrum.  In this case, the fear of the unknown caller and message.  I could hear my heart beating in my chest as I called my voice mail.  I don’t dare hold off listening to the message because if I put it off, the fear of the unknown message will continue to press on my panic button.  Usually, a phone message is no big deal and I can sigh a ton of relief.  But not that morning.

It wasn’t a message for me but for someone I know.  It was upsetting because I didn’t give that person my number.  They were trying to reach someone else through me.  This infuriated me being put in the middle.  I don’t get many voice mail messages and I don’t want to get any that are not for me.

My world had temporarily been rocked.  I was screaming inside.  The thoughts that this was a small thing and within my control to delete the message was overwhelmed with my thoughts of invasion of my privacy and fear that I would continue getting calls that weren’t for me.  But I had a place to go and a job to do.  I wanted to go to some safe corner and rock back and forth; or pace the floor, telling whoever a thing or two, but that wouldn’t have gone over too well in a gym filled with fourth graders.

It got to the point of being almost unbearable as I walked around the gym monitoring the students.  I said a little prayer pleading for help.  Then, my mind took a turn to the music.  The coach was playing Neil Diamond songs.  I knew those songs.  Back in my youth, I paced the floor to Diamond songs with my wild imagination.  I knew most of the words and so I started mumbling them.  I “stimmed” to the music with foot tapping.  It was working.  My heart stopped pounding so hard and I was able to breathe.

The coach began a new activity.  At the roll of a jumbo dice with names of exercises on each side, the dice landed on the exericse those who lost had to do.  I decided to join those in the middle instead of observing from the sideline.

I did the arm curls, leg lift-ups, knee bends, and touch your toe bends.  Now when the dice landed on push-ups, I sat that one out.  HA!  It was a relief that the exercies were increasing my heart and breathing rate instead of my panic button doing the honors.

I thanked the Lord the crisis had passed.  It helped me tremendously to pray followed by the idea of singing to the Diamond songs and exercising with the students.   Just things to do to channel my energy somewhere else.

My thinking about the phone message eventually turned positive.  I can’t stop whoever from leaving a voice message, but I can delete it with the push of a button.  Maybe next time it won’t push my panic button, but if it does, I know Who to call on.