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Autism: Winter

Contrary to what seems ‘normal’ in society, I don’t often like to talk about the weather. It seems unimportant and pointless for the most part. But it snowed the other day, and…

First it was really light. My friend, who had planned to come over for a visit that day, cancelled. There wasn’t much snow here at the time, but where she lives (maybe about 10 minutes away from my house, or a little more) is in a bit of a snow belt. They didn’t want to chance the drive.

I had woken up early that morning – as I had been doing since the time change in early November. And when I say ‘early’ I don’t mean an hour or so. For about a week I was waking up every morning between 3:30 and 5am, and was not able to get back to sleep – not good when it was after midnight before I finally fell asleep. I wouldn’t get out of bed until 7am, but still…

Anyway, since I was up early, and since I was expecting company, I started cleaning early. By the time the visit was cancelled, I had most everything done, and was feeling good about the state of my home.

The snow picked up after that, and pretty soon, the entire world outside my window was covered in white. The roads quickly got bad, and I could see the cars sliding around as they were trying to drive (very slowly) up the street. I couldn’t take ‘my girls’ for their walk because without sidewalks, and with the vehicles sliding around as they were, it was just too dangerous to be out on the road.

With all of these changes to my expectations of how the day would go due to the weather, I could have been… deregulated, is the word I want to use here. It could have ruined my entire day. It wasn’t even a choice or an effort not to struggle however.

I was sitting in my (quite clean) living room, with my girls contentedly lying in their bed beside me, and was looking out of my window at the world of white outside, and I felt thankful to be in that moment. No disappointment. No feelings of being overwhelmed, or hurt, or irritated, or… I was happy.

I am not happy all that often. I struggle a lot with anxiety and depression, irritation, sensory issues, pain over the world… but that afternoon I felt really good.

When I went on the internet, I was presented with a question: “Does anyone honestly even like winter?”

And in that moment, my answer was, “Yes!”

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Autism: Dressing Appropriately

It wasn’t exactly a cold day, but I had been getting sick. I had washed my hair, and since blow drying causes my scalp to itch intensely for a long time after and I therefore avoid it most of the time, my hair was quite wet when we went out that night.

chilled

Already feeling chilled, and knowing our seats were near the ice of the hockey arena (my husband is given free tickets when his friend and coworker, who holds season tickets to the home games, can’t go) I decided to put on a toque and gloves, and was glad that I did.

My husband also wore his toque, as he almost always has on some type of hat when we go out.

So there we were at the arena dressed in a way that made sense to us. In between periods we get up and walk around the arena – it is good for exercise, and a good way to spend the time.

On one of our rounds, however, a man stopped us. We didn’t know these people at all, wouldn’t recognize them to see them again, and I can’t see how what we were wearing had any effect on him – but he stopped us and seemed sincerely upset that we were wearing toques on that night.

He turned to his wife and asked her if it was cold enough for the way we were dressed. She said no, but that she thought our toques were ‘cute.’

He shook his head and mumbled as they walked away and I thought, “what does it matter to him how we decided to dress?”

It isn’t like we were naked, or wearing the other team’s jersey, or walking into a sauna dressed for winter – yet he was quite upset and I don’t get it. If he could get so upset over something that didn’t effect him in the least, how would he respond to something that was actually important?

It is true that I don’t often have any clue what other people are wearing. Even when I try really hard I can hardly ever keep in mind what people have on from the moment I turn away – I just don’t see it. That has always made it near impossible for me to dress in a way that I ‘fit in,’ and by the beginning of high school I had even given up trying.

I am, however, very sensitive to the weather. Hot, cold, wet, windy… I feel all of these to the point where if I am not dressed appropriately for the weather, I am completely fixated on that discomfort (read: pain!) For that reason I am very conscious that what I choose to wear is comfortable for the situation.

While I was in the arena – chilled, near the ice, getting sick, and with wet hair to boot – I was thankful that I had decided to wear my toque. It was only after this… interaction, that I became aware that we were the only two people in the arena dressed so warmly. Still I don’t understand why that mattered to much to him.

By the time the game was over (‘our team’ won 7:4) the weather had turned. The wind was blowing hard, filled with rain that even looked like snow up above us, and it was cold! So cold that my teeth were chattering by the time we got to our car – and this man still had me questioning my decision to wear a toque to the game.

Ridiculous.

 

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Autism: Fair Trade

The weeks go by, and still the sky is filled with smoke. There has been no rain. The fires continue to burn. Many days, I can’t even see the mountains or the lake from my house – yet the lake is only about 7-8 houses down the street. For much of the rest of the year, we have a wonderful view of both.

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Last year, it was the spring that was hot, and the rain came all summer. It was great!

This year there was so much rain in the spring we had mud slides and flooding. And then the rain stopped, and now there are fires.

The fires are close, but they’ve been closer other years. Because of that, every time summer comes around again, I consider what it would mean to us if it were our town on fire; our town being evacuated; our home burnt to the ground.

I consider those things, and do what I’ve always done – seek out the positives that might be brought about from that. I think maybe I could have been an optimist… if only I could block out reality.

The consolation from these thoughts is rarely equal to what I would be giving up – but they do help me to avoid meltdown (before I am alone, at least.) Like when I was dating my husband, and never knew if he would ask me to do something with him, or turn and walk away. I don’t handle the unexpected well – but didn’t want him to see that (as much as possible) so I would comfort myself with this:

“If he doesn’t take me out, I can go home and have a Pepsi.” Not exactly a great trade, but as I said, it did help. Of course it meant I always had to ensure I had pop in the fridge at home. It also meant really working to savour that pop until my mind was calm enough to move on – which also fed an addiction to Pepsi that I still frequently have to fight some 16 years later (even though I am rarely bothered when I stay home now.)

In fact, some things become so frightening to me that the things my mind creates to get through are much bigger than a can of pop – and I fixate on the consolation to the point that people on the outside begin to believe that is what I want; when in fact ‘that’ is only masking the very real fear of what I have to lose:

  • my dog
  • my children
  • my confidence
  • my job
  • my house
  • my husband
  • my family

In my earlier days, those around me became so convinced that what I was fixated on was what I wanted, that they also convinced me it was true (though I fought and denied it for a time) and caused it to become a reality. I think that is what they call a self-fulfilling prophecy? Only the idea came from me – they just didn’t understand at all that it was hiding a fear rather than revealing a desire.

People around me are still convinced now that what they see is desire – and it still costs me. It still brings those fears into reality. And it is still not enough to cover the pain of the loss.

So the smoke fills the air and I think, “if our house burns down, at least the renovations will get done, and I won’t be overwhelmed by all the stuff we are storing, and the things that need cleaned, and…”

And for a moment it calms me. For a moment. I think of a fresh start, and it eases the burden. For a time, I might even be convinced this is what I want.

And then I remember the cost. I look at my animals, and remember that when my grandma’s house burnt down, her 5 cats were killed in the fire – and upon returning home and seeing the smoke, she burnt her hands trying to save them. I can’t lose my babies – especially not like that. So I pray, “Please Lord, if our house is going to burn, let us be warned so we can all get out on time.”

But then I look at the box of my dog’s ashes. And there are the pictures of my son from before we got our digital camera. And there are the dolls that sometimes seem so real to me. And there are boxes of artwork and schoolwork from my children. And there are my journals, and my books, and…

“Wait,” I cry, “I don’t want my house to burn!” And that is when I remember that my fixations are more likely to reveal my fears than my desires. Not what I want. Not what I want! Like trading a relationship for a Pepsi – because of course that is a fair trade!

 

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Autism: Through the Storm 1

The weather warning came in a couple of days ahead of schedule, as I remember it. It was no surprise when the wind hit, and it wasn’t the first time we watched from the (hopeful) safety of our home as the cedar hedge beside us nearly bent in half with the gusts.

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It was frightening. I will give it that. Yet we don’t live in tornado or hurricane country. It could have been so much worse.

Though I watched the maple tree in our front yard, concerned that it might come through the house, I wasn’t that worried. We have had such storms before, and it held up just fine.

I held off a little while before shutting down my computer, hoping that we wouldn’t get a power surge and fry it before I could shut it down – but then, a power surge would likely fry the computer whether it was turned on or not.

There was time to get through my bedtime routine (take care of my ‘girls’ – brush their teeth, feed them, take them out – write my journal, watch some Netflix, read on my tablet…) when the power went out. “No big deal,” I thought. It was expected, after all.

I turned off my tablet, plugged it in (out of habit, obviously it wouldn’t be charging) and tried to sleep. Tried.

There is this cherry tree (oh poor cherry tree) which I planted ten years ago in the worst place I could have chosen. To be fair, the tag said it was a dwarf – and it is most definitely not a dwarf. Even so it was a bad place for it as there is too much shade. It towers above our roof line, though we have cut it back, and is right against the corner of our carport.

All night long that three swayed back and forth in the strong wind making loud creaking, and deep moaning noises – it almost sounded like a really sad ghost movie or something (but couldn’t have been as there was no power.)

Above that, since my aquarium wasn’t running for white background noise (I have no fish, but keep the aquarium running in my room to help me sleep) every sound had Molly barking… and there were a lot of sounds.

Needless to say I woke up tired. Very tired.

 

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Autism: Shouldn’t Have Gone

After several months of exhaustion, I finally had some energy. Every day I got more done, and felt better about the way my life was going. And then…

It rained.

It rained for days, and I felt myself growing more and more hopeless and tired. Try as I might, I could not bring myself past the depression, or regain the hope I had so recently held. For rain? I wondered. And likely that was a lot of it. Certainly it was all I could think of. Until…

I went to life group (Bible Study) and was reminded of what we had talked about in church last week. I guess I had blocked it out. I used to be pretty good at that – or so I thought. I spent years dealing with that very issue. I should have been past it already! At least I thought I was mostly past it.

Sure, there were moments when the memories overwhelmed me, but it isn’t like I think about it all the time. It isn’t like it affects me all the time. I mean, lots of woman have gone through it, right? But most women still live okay. Isn’t the statistic like 1 in 5, or 1 in 3 even? If so many people have experienced it, why should it cause me so much pain?

I dealt with it for years. Most people close to me know about it, it isn’t like I am carrying this big secret alone or anything. Plus I have my faith. So many people don’t even have that.

Forgiveness has been given. The man died long ago. I don’t experience that anymore.

Unlike for most of my teens and early twenties, I am able to close my eyes without having to battle against flashbacks most of the time. They only come when I am talking about it, or thinking about it, or… someone asks about it.

Maybe that is why the week has been so hard. They weren’t talking specifically to me, but I still knew this was my history, too. It made me think about it. It made me remember.

But the week wasn’t so bad. Sure, Sunday at church was hard – but the afternoon was nice, and I spent it outside. I forgot, as I replaced my negative thoughts with plans for my garden. Monday, Tuesday, and Wednesday were alright, too. I had energy, and got a lot done in my house. Thursday it rained, and though I forgot the message, as the time for life group grew nearer, I realized I really didn’t want to go.

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Only, aside from how chilled I felt due to the rainy day, and how much I would have rather spend the evening with my dogs, under my blanket, watching Netflix – there was no good reason I could find not to go. So I went. And then I remembered, and realized it would have been better for me had I stayed at home.

So Friday was really hard. I was so depressed that nothing at all seemed to have any hope. “What is the point,” I thought. “Nothing I do will make any difference anyway.” It rained and rained. It rained so much that a couple of houses not far out of town were flooded, and destroyed by mudslides. (The people were okay, but maybe the pets weren’t.)

Well, the days were rainy, and the days were hard – and I thought it was all about the weather. But perhaps there was more to it than that.

 

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Autism: Drained of Energy

My head is pounding today, and once more I have no energy. I should have expected it, I guess – but as is usual for me, when I do have good days, I expect them to last. After 40 years, I probably should have learned this isn’t the case for me. Still, it is good to have hope.

For months my energy has been low, even for me. I hardly have the ability to do routine things, like cook and clean, let alone find motivation to add anything to my schedule.

In the last 6 days, I had decent energy for 4 of them. Sunday I was really tired, but I have come to the conclusion (after months of Sundays ending the same way) that church – even when I enjoy it, and feel good there – exhausts me. Every Sunday I am overwhelmed, and exhausted, and prone to meltdowns. I guess that is the cost of being around people.

For four days, though, I had energy. That might not seem like such a big deal for most people, but I keep a ‘mood chart’ which I send to my therapist once a month. This keeps track of how depressed, anxious, and irritated I am each day, along with how much sleep I got, which medications I took, and how much energy I had that day.

The energy section is on a scale of 1-4, with 4 being high. Some days I have taken to putting in 0, as I haven’t the energy to stand, let alone get anything done. Most months I will have several squares marked ‘1’, with more around ‘2’, and the occasional 3. I hardly ever reach 4 for energy; that might come if something exciting was planned, but isn’t even guaranteed for that. I am not a high energy person. Maybe one or two days a month would be marked ‘0’. I just couldn’t.

For the last three or four months however, the pattern looked more like a computer code or something (I don’t know that much about computers, but…) 1-0-0-1-0-1-0-0-0-1-0-1… for months. I was sick twice during that time. Really sick. Well… not hospital sick, but sick enough to think it could kill me. Both times the illness held bad for a couple of weeks, and left me drained after.

It is not unusual for me to have low energy, but this is ridiculous even for me.

And then in the last week, I have had 4 days where I marked ‘3’ on my chart. Four! And I can’t express how good those days felt. I cooked. I cleaned. I exercised. I practised my keyboard. I made a gardening scrapbook. I planted seeds in starter pots. I dreamed.

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How wonderful!

I wonder what it would be like to have energy like that most of the time. Some people do. I know some people do. But I never have. Perhaps if I had energy, I wouldn’t be so depressed all the time… I wonder: Am I depressed because I rarely have energy, or do I rarely have energy because I am depressed?

Even as a child, though, my energy was very low… but then I remember crying myself to sleep every night, too, from the age of about 7 or 8 – so it is possible I was depressed even then.

I don’t know. What I do know is that I had energy this week. I had it, and it felt so good, and I thought that this time I would be able to hold onto it.

Today, however, my head is pounding, and it took me most of the day just to gather the energy to pick up the keyboard sitting on the table right beside me to type this blog. That was all the effort I could manage for today. I wish… I wish I had energy.

 

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