Featured

Once upon a dream

No one is useless in this world who lightens the burden of it to anyone else.

~ from Dr. Marigold

by Charles Dickens

It’s 5:31 am on Tuesday, June 8, 2021. I’m not usually awake or coherent at this time of day, but today is exceptional. Today I am recovering from a distressing dream I just had.

Many years ago I heard that writing down a dream immediately after waking is the best way to remember it, although I have never actually tried this tactic. But, as they say, there’s a first time for everything.

As the dream begins, I find myself as a passenger in a car with an assortment of high school classmates. Nick. Heather. The other Heather. Tanya. Shelly. Even though I knew these people a long time ago, it’s the present and we aren’t teenagers anymore.

Freezing rain is falling, so we drive carefully. We want to go out to eat in the area near where we grew up, but are having a hard time choosing a restaurant. This version of the town is very different than what I remember from my youth. It’s growing and prosperous – almost like suburbia if there had been a nearby metropolis for it to attach itself to, not the small, Midwestern farming community it actually was.

We end up at a place outside of town that I’m told is called Ted’s. It’s mostly a burger and steak restaurant like those common in the Midwest, but also one of those establishments that people from miles around patronize because of the amazing, award-winning food. The others had eaten here before, but it was new to me.

The restaurant is packed with people. As is often the case, I find myself at the end of the line in our group as we wind our way through clusters of diners and down long hallways. Have you ever felt like an afterthought, as though you’re just tagging along with people who don’t seem to care if you’re with them or not? That’s a feeling I’m all too familiar with in real life.

Back to the dream. The building itself seems to be a converted house with multiple additions as the restaurant expanded over the years. I’m trying my best to keep up, but I don’t know where I”m going, unlike the rest of the people in my group. There are so many twists and turns that I soon find myself separated from the others and utterly lost.

As I stumble along, I lose my shoes somewhere and spend the next twenty minutes or so looking for my group. When I finally find them seated at a booth in “the dungeon”, which is located in what used to be the basement, I am beyond ticked. No one seems to care that I had gotten lost in this unfamiliar surrounding. No one came looking for me. I grab a bottle of ketchup and squirt it in the other Heather’s face. To my surprise, my parents are there and I squirt them, too.

The others have already ordered their food. It seems I wasn’t worth waiting for. This hurts. I silently sit at the table, stewing internally now, as waves of anger wash over me. Everyone else goes on with their meal as though nothing has happened.

When the waitress asks me what I’d like, I tell her that I’m not hungry. In reality, I am famished, but what I really want isn’t on the menu, even though there are pages and pages of options. When I was younger, a local restaurant made an entree comprised of a slice of bread topped with a hamburger patty, french fries, and melted cheese. If you know what a rare bit burger is, it was similar to that but the cheese was milder and, in my opinion, preferable. This is what I’m longing for now, but they only have the rare bit burger on the menu. Because they don’t have what I want, I stubbornly and defiantly order nothing.

I happen to glance at the front of the menu and notice that this place is called Otto’s, not Ted’s as I had been told. More internal outrage.

Someone seated at the other end of my bench is absentmindedly rocking back and forth, forcing me to as well. This constant to-and-fro motion becomes the proverbial straw that breaks the camel’s back. I fly into a rage, grabbing the ketchup bottle again and squirting people at random. I threaten someone with mustard instead when they complain.

I’ve had enough – I have to get out of this place immediately. The noise, people, and my own outrage overwhelm me so much that I’d rather go outside in the sleet and rain without shoes than stay in this veritable hell one more second. I hear other diners making comments about me, saying how I am behaving like a child and need to control my temper.

And then I wake up. I’m lying in bed, feeling as though I’m hyperventilating, my breathing rapid and shallow. The tears start to flow as I realize what just happened to me. For the first time that I can remember, I had an autistic meltdown, and it happened within my dream. Now I know what it really feels like, and I sob for anyone who has ever experienced a similar episode.

(You can read more about autistic meltdowns in my previous post The price of a gallon of milk. To my knowledge, I have never actually experienced a meltdown in real life; instead I am more prone to shutdowns, which you can also read more about in my post Oh, the noise, noise, noise, NOISE!)

I think mostly of my son, who is now fourteen years old and frequently experienced meltdowns for most of his life up until the past year or so. I had so much sympathy for him prior to this, but now I have empathy as well.

I’ve had panic attacks before, but this was more than that. As my rage and anger grew inside me during the dream, I could see beforehand what was going to happen, but there was nothing I could do to stop it from happening. And what’s worse is that no one else seemed to understand or care about what I was going through. Everyone either dismissed me or acted as though I was behaving immaturely.

As is often the case with dreams, some of the specifics seem rational as the dream is occurring but don’t make much sense to the lucid. However, one thing is clear to me – the most emotionally damaging part of the dream was how other people either acted as though I didn’t exist or didn’t understand what I was going through.

I do understand that it’s difficult to always know what others are experiencing and what internal burdens they must bear, especially when they’re complete strangers. However, I propose that one goal we all should have is to do what we can to lessen the burden of others as we collectively tread upon this giant rock hurtling through space.

So I’m asking you directly, right now – how are you going to lessen the burdens of your fellow humans? Does criticizing, berating, judging, or demeaning someone actually help in any way? I confess that, through my lack of understanding and empathy, I have displayed such reactions in the past, although I’m trying my best to do better.

Others may be experiencing things that you don’t understand, but I assure you that your reaction or inaction sends a very clear message tot hem. Please sincerely contemplate this and adjust your deeds, thoughts, and actions accordingly as we do our best to make this world a better place for everyone.

Yes, it’s uncomfortable for all involved, but consider this – who is more uncomfortable? Who has the greater burden to bear? Is it you?

The price of a gallon of milk

I don’t typically make New Year’s resolutions. Why wait until a new year rolls around when you can make a change right now? That’s my usual logic, although I do occasionally stop and think about things I’d like to change when the calendar flips over to a new year.

One change that I decided to make at the beginning of last year was to try to reduce the amount of plastic our family consumes. This is an ongoing challenge because just about everything available for purchase at our local grocery stores comes in some sort of plastic container or wrapping.

We do recycle as much as possible, but learning the dismal amount of how much plastic actually gets recycled (only about 9%!) inspired me to try to reduce our plastic consumption in addition to recycling.

I was excited to find that some brands still sell milk in paper cartons rather than plastic jugs. Remember the milk cartons at school lunch? This was perfect, I thought! Our family of five goes through a lot of milk. It’s slightly more expensive to buy milk in half-gallon cartons than gallon plastic jugs, but I thought it would be worth it to do my part in helping the planet.

It turns out that not everyone in the house was as excited about my solution as I was. Well, really just one person was less than thrilled that I was no longer buying the same kind of milk as before – my 12-year-old son was not a fan.

My son enjoys a reflective moment at the Biltmore

In case you’re not aware, he is also on the autism spectrum. In fact, it was because of his diagnosis that my own was also discovered. He displays a lot more classic symptoms of autism than I do. In this case, strict adherence to routines and distress when those routines become disrupted would be on full display.

So what’s the big deal? It’s just a different kind of milk! To most people, that’s true – it is just milk. But to someone on the spectrum, it’s so much more than that. People on the spectrum rely on certain routines and things remaining the same because the certainty and familiarity helps them find calm and comfort in a world that is anything but calm and comfortable for them. When things change and their routines are disrupted, autistic people can experience significant distress and lose control of their emotions.

The first morning with the new milk was a school morning. Like every morning, I dumped his favorite cereal into a red bowl – he won’t eat out of a yellow bowl – and poured this similar yet unfamiliar white substance on top.

After one bite, he looked at me, perplexed, and asked, “What’s this?”

“Your cereal,” I responded.

“No, it’s not. This milk tastes funny.”

“I’m trying something new. Instead of buying the milk we usually drink, I got a different kind that comes in cartons so that we don’t use as much plastic. It’s better for the environment!”

I knew it was possible that he wouldn’t react well to this change, but I still held out hope that that wouldn’t happen. Sometimes he surprises me by tolerating change better than I would expect. But not this time. This time he had a meltdown.

Those who are unfamiliar with autistic meltdowns are likely to assume that someone experiencing one is just having a temper tantrum. In fact, for many years before we discovered his autism, we naively assumed that it was misbehavior on his part and that, like most children, he would eventually grow out of it. When his episodes became worse instead of better as he grew older, it started to become clear to us that there was something much more serious going on.

I’ve never taken a video of one of my son’s meltdowns for a few reasons. First of all, there’s so much chaos going on that there’s no time to grab a phone and start recording. Secondly, my instinct is to help him calm down, not document it. He responds well to pressure, so I try to wrap my arms around him and gently squeeze. It’s difficult to do that and record at the same time. And, most importantly, he can’t give his consent to being recorded and I don’t want him to feel like he’s some kind of side-show attraction.

In lieu of having any visual evidence of an episode, the easiest way to describe it in words is that he becomes visibly upset – he will grab his head with his hands, make wild gestures with his arms, and pace erratically. He will also make guttural noises in the back of his throat, clearly evident of distress. Sometimes he will throw or hit nearby inanimate objects. He has never become physically aggressive with us and has no intention of hurting anyone.

Here’s a video someone else made of a typical meltdown that he experiences. Please be aware, though, that a meltdown can be displayed in many different ways – biting, hitting, banging one’s head against a wall, walking in circles, flapping hands, crying out, heavy breathing, etc. Below is just one example of what a meltdown might look like.

Reenactment of one person’s experience during an autistic meltdown

What would you assume if you saw someone behaving in this manner and you didn’t know the person was autistic? Spoiled brat or bad behavior if it were a child? Maybe a mental disorder if it were a teenager or adult?

Before I knew what an autistic meltdown was and why it occurs, I said things to my son and reacted in ways that I’m not proud of. “Why can’t you behave?” “You’re too old to act like this!” I reacted in frustration and punished him because I didn’t know any better. I assumed he was intentionally giving me a hard time when, in reality, he was having a hard time. He needed me to be there for him while he suffered through these episodes, not to chastise him for something he can’t control. It did neither of us any good whatsoever for me to be punitive, admonishing, or judgmental.

One of the best things to happen as the result of his diagnosis is that I handle his meltdowns so much better. Now that I know why these episodes occur and that he’s not misbehaving, I react in a much calmer manner myself. He calms down more quickly when I respond to him in a calm manner.

On that fateful morning, instead of getting angry at him or accusing him of trying to avoid going to school because I simply changed the type of milk we drink, I told him that I would buy him some yogurt that he likes and deliver it to him at school for his breakfast. He was able to calm down and voluntarily go to school, albeit a little late. I called his special education teacher and explained the situation, which she understood completely

So instead of a slight increase in the amount we pay for a different kind of milk, in the world of autism, the abstract cost of this simple switch is much higher. The price we pay at the cash register doesn’t include the cost of the emotional turmoil inflicted on everyone involved. I always have to weigh the options and consider if making a change is worth the inconvenience it might cause. And yet, now that we know and understand more about autism, the cost isn’t as great as it would be if we had no understanding of the situation.

My son still won’t drink the new milk, and that’s OK. Now he likes toast in the mornings instead.