Oh, Mom, Do I Have to?

A seemingly simple errand can present speed bumps on the Autism Spectrum. The other day my Mom sent me on an errand to pick up some items at the grocery store. Her list was short but heavy. Three cartons of bottled water, 24 bottles each, is not for sissies to pick up. I didn’t mind since it fit into my “daily step” count on my “Fitbit”. It’s become an obsession to meet my daily goal. By just unloading the water, I got around 500 steps in.

Handling the heavy water load was a breeze compared to taking care of a mere pound of ground beef. Why? I had to go to the meat counter and request a pound from a total stranger known as a butcher. As soon as I walked into the store, I headed for the meat department to get it over with to relieve the tension I had since I left the house. When the butcher gave me the wrapped pound of beef with a “have a nice day” greeting, my anxiety took a hike and I could breathe easy-like.

When I lived by myself for over 20 years, I don’t recall ever making a grocery store trip that included a stop at where the butchers hang out. I didn’t have a desire to learn how to cook what the butcher had to offer but if I had, I still probably would have been reluctant because it would require social interaction.

This is just one example of a puddle in my daily life of living on the Spectrum.

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Hangwire

It isn’t a chore for me to organize my stuff; it’s a TREAT! It’s not so much re-organizing the BIG stuff such as beds, recliners, etc. I’ll do that but on rare occasion. It’s more the small stuff such as the clothes in my closet or drawers. I want my space to be as predictable as my routine.  I intensely dislike playing hide and seek where I am the one seeking and seldom the finder.

I went overboard this last summer. With the kids out of school, I was on break since substitute teacher aides are on hiatus. Solo activities help to keep me in a good mood. On one afternoon, I took to organizing my bedroom closet for the upteenth time.  I like doing it so much that I stopped counting how many times I’ve given a closet a re-org.

After I finished tossin’, I needed to go garage shopping. Why? I had tossed more than half my clothes. The criteria for what to toss out was what I hadn’t worn in a year or so. It became abundantly clear to me that a limited amount of my clothes see the light of day. I tend to wear the same old things; a creature of habit.

I had worked so hard that I got sweaty and thus, cranky as a bear. Ought oh! As my energy level goes down, my tendency to have a meltdown goes UP!  I  felt a volcano rumbling within in.  I should have slowed down but once I start something, it is truly hard for me to put the brakes on it. How did I know I was hitting the boiling point? My clue was engaging in combat with the hangers.

I had a lot of hangers left over after discarding so much of what they had hung up. I was trying to put them away in a box but they didn’t want to go away quietly. One entangled with another one and separating them apart got on my nerves. Some flew on the floor. Well, okay, I gave them a little boost.

Fighting hangers was a sign I was heading for meltdown country.  I did what sometimes chases a meltdown away.  I walked away and went out to the backyard for a hanger break. Maybe I could walk off my crankiness. Since I like being productive, I picked up dead leaves and twigs. It may sound strange but it is an activity that sometimes will soothe down the rumbling.

After the lawn looked sufficiently leafless, I had calmed down by then and I returned to the hanger mess on my bedroom floor.  I put the hangers in the storage box without any more combat. After storing the left-over hangers and the clothing that didn’t make the final cut, I took a good look at my closet — my masterpiece. It had more empty space and was organized to the hilt. Just “perfect”.

It can be so exhausting living on the spectrum aiming for perfection.

 

 

 

 

 

 

 

The Meltdown Mystery

I was on a date with my tennis racket and ball at a campus practice wall when another meltdown started brewing.  There are six practice wall cages and when I arrived, I was by my lonesome.  Then someone showed up with a DVD player and my opinion of their music was:  you call that music?

Seriously, the DVD was letting out a strong bass tone that felt like someone thumping at my ears.  I felt a meltdown coming on.  What does that feel like? A rumbling volcano comes to mind.

I knew if I remained in the cage, I would feel like a caged animal and so I walked out of the cage.  At least, I had the luxury of walking away from a meltdown trigger with a mile’s worth of walking trail out of earshot range.  The internal rumbling stopped somewhere along the trail. Eruption averted.  After walking the entire lap, the tennis player with the DVD player had left.  I didn’t return to the cage because the humidity and walk had done me in.

Of all the symptoms I deal with living on the Spectrum, the meltdowns are the toughest.  They are the volcanoes. Sometimes they just produce a rumble; but oh, my goodness, there are those that spew out lava (aka tears).

I usually know when I’m having one, but I don’t always know what the trigger is. Before I learned I was on the Spectrum, I used to have peculiar and frightening meltdowns at night. This went on for many years and I didn’t know what was behind them. They would come on me suddenly and would feel like my bed pillows and sheets were conspiring against me. I would get up out of frustration and throw the pillow down as if it was a bully.  I’d sling the sheet/bed cover on the floor as if it was my worst enemy.  The picture that came to mind was behaving like a cat with its tail caught underneath a rocking chair.

After this happened enough times, I knew it was something I had no control over and I just had to “rock” my way through it. The rocking was “stimming” but I didn’t know what stimming was at the time. As surely as it came over me, it left me after minutes passed. The minutes, however, seemed much longer than that. Fortunately, I haven’t had one of those in a couple of years.  I’m guessing that my antidepressant medication which has helped me sleep much better have something to do with that.

However, I do still have “daytime” meltdowns. Those haven’t stopped paying me visits.  Sometimes they come upon me without any obvious trigger, but most of the time there is one. It can be a sound or smell that rises the tension in my body. It may be a pet peeve and my reaction is way out of bounds with it. If I can walk away from the annoyance, the odds improve of a lighter meltdown or not having one. If I can’t, it’ll be Mount St. Helens all over again.

 

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.