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Category Archives: Experiences of an Autistic

Autism: Dead or Alive

I woke up coughing at 5:30am. This was not related to the smoke in the house that I mentioned on my last post – though it probably had something to do with it, my house was not smoky on this particular night.

I felt like I was choking, and my first thought (which lasted for several minutes) was that there had been a fire and I died of smoke inhalation. For about 5 minutes, even though I could dimly see my room around me, felt and heard ‘my girls’ beside me, and was aware of one of my cats on the bed as well (I have a very full bed these days!) I completely believed this to be true.

When I told people at my Life Group (Bible Study) about this, one of them asked if I was in Heaven. When I said, “No, I was looking at my clock, and into the faces of my dogs,” she mentioned something about the possibility that I wouldn’t make it there; to heaven, that is…

Panic!

If I dream I have died (though this wasn’t a dream) and don’t find myself in heaven – does that mean I am not saved?

Thankfully my husband responded that he believes there will be animals in heaven, and gave his reasons – so in a few seconds I was calmed by his words (thank you, dear husband!) I need my dogs. I don’t think that will change when I am dead.

So there I was, lying awake in bed, fully convinced that this was the beginning of the afterlife and I would be trapped in this place (at least I had my babies with me!) when I realized I must be alive.

How disorienting that was!

It was then that I felt a deep longing for my youngest (foster) daughter who was taken from me 8 years ago, and remembered that I had been dreaming of her – though the dream escapes me now – when I was awakened by the choking.

Perhaps in those last moments of my dream there was a fire, and I was dying in it.

What a strange experience that was, and I wonder if there are other people in the world who are fully alive, and believe they are dead. So weird.

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Autism: Smoke and Panic

The last couple of logs that I put into the fire in the morning didn’t burn well. While I was making supper, I kept smelling smoke. Finally I figured out that it was from the logs (our fireplace doesn’t tend to smoke, so this was highly unusual.) So I moved the logs around, but the upstairs was still all smoky.

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My husband looked into the fireplace when he got home, but didn’t see anything wrong.

I guess the bigger challenge was that I had only just realized that our wired in smoke alarms weren’t working (I wonder how long ago that started!) We didn’t even have backup battery operated ones that worked, so my anxiety was very high.

After all, I have known a few people whose houses have burnt down. My grandmother was one of them, and though the people were all out of the house at the time, she lost all 5 of her cats in the fire, and burned her hand when she tried to open the door to get them out (she was just arriving home when she saw the fire.)

If my animals died in a fire, it would be a trauma I would not overcome. It would hurt me for the rest of my life. This I know.

Well, the smoke filled the upstairs enough that it aggravated my throat through the night. That, mixed with my panic about the smoke alarms, set me into a panic that made it very difficult to get to sleep.

It was about 1am before I slept, and has been happening for about 2 months now, I woke up at 3:45 am unable to get back to sleep.

Though I am sleeping little, doing little, and functioning very slow, the days are flying by.

I feel detached from the world, and disoriented from the speed – like the roundabouts they used to have in the playgrounds when I was a kid (before they regulated the speed they were able to spin.) I feel like I am watching the world spin and waiting for my opportunity to jump on – but it is too fast, and I get dizzy just watching it.

 

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Autism: Letting Go

It isn’t that the entire day was hard, but…

I woke up at 4am as I have been doing far too often lately. Since it is typically after 12am that I finally fall asleep (that takes a couple of hours itself) it is very unfortunate that, less than 4 hours later, I am awake and unable to get back to sleep. It certainly isn’t that I am not tired. In fact, I can’t even get up – I just lie in bed for the next three hours trying unsuccessfully to fall back to sleep.

Needless to say, I have been very tired, and not functioning very well.

There was some cleaning to do – laundry especially. Ever since the city workers came by and blasted out our storm sewers while I had laundry going, it has been prone to flooding. I don’t know if they are connected, but that is the load it started with. The clothes get cleaned fine, but when the washer is spinning, piles of fur and debris (much more than what is reasonable from what went into the wash) pour out with the water into the sink.

If I am not there to catch it, the water floods over the sink to cover the laundry room floor, hallway, and the bathroom beside (where it pours down the drain by the shower.) Such a mess! This has been happening for at least a couple of months now.

Since I have to watch the washer as I do laundry, I stayed downstairs to sort through boxes of food storage containers. I have no idea why we have so many – but they had been sitting in boxes in storage for over a year now, and we don’t really have storage space in our home.

That was exhausting, but I mostly got through it. I put our Christmas tree outside (so the animals wouldn’t eat it) for the thrift store – I was the only one who cared since our kids were moved, and we really haven’t the space for it (we will use a small tabletop one instead.) I left the rest down in the hallway, though I am sure it will annoy my son who rents the space from us since he has a very curious cat.

In the afternoon I spent several hours sorting toys into bags to give away. This was a very painful activity for me. Though our (foster) kids have been gone for over 8 years, and I haven’t even babysat in 7, and have been considering giving these toys away for at least 6 years, it was still exceptionally hard for me.

But I have felt a strong (near constant) prompting over the past few weeks to do this. Because it hurts, I kept blocking the prompting out, saying I wasn’t ready (I would probably never be ready if left to myself, to be honest) and the push kept getting stronger.

So I got the toys sorted and waiting in the upstairs hallway – but as I said, it hurt… a lot!

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So many hopes, dreams, memories, and losses tied up in those toys – and to give them away!!! But they should be played with, and…

I can’t have children, and I can’t go back – both of which frequently cause me a lot of pain in themselves. I am being asked to let go, and though it really does hurt, I know it is the right thing to do.

It was Misty (my newest addition – Chihuahua) who was most concerned as I sat crying, surrounded by piles of toys my children used to play with – though Clara and Molly looked to see what was wrong, too. Sweet girls! I am so very thankful for them, and it is only because of them I was able to answer this call to let go, but…

This is hard!

 

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Autism: Life Speed

I have been reading a book that was recommended by a friend. Though I am only about 1/3rd of the way through, and have no idea where it is going, it has brought me to think a lot.

In the book a man is given an unknown substance which causes his body to slow down. To really slow down. Something like four years passing feels like hours to him, and he is unable to register much of what is happening in the world around him.

When he began to slow down, people sounded like they were talking too fast, and their words were all strung together. People or objects would move around him in a blur. As it progressed, he couldn’t hear the words at all, and much would happen without him knowing it.

It just got me to thinking about how I have said on several occasions that the world moves too fast for me. I can’t keep up, and am easily burnt out by what is nowhere near the typical pace of people in the world around me.

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Obviously my challenge isn’t nearly as severe as the man in the story, but…

On what feels like an exceptionally busy day to me I might do 2-3 loads of laundry, vacuum and wash the floors on one level of my house (and not even all of that since one room is storage and one room has carpet that doesn’t get washed so frequently) and clean 1.5 bathrooms – and really, since I generally wash the shower when I am in there the night before, I really only clean 2 half bathrooms.

I will rinse the dishes and load them in the dishwasher, feed, take outside, and maybe walk my dogs (they won’t go out if the weather is bad.) Visit one person for 2 hours, and possibly make supper for my family, which I do 3 days a week.

That is an exceptionally busy day, and even writing it seems overwhelming to me.

I can handle a day like this maybe once every other week, and even then I often struggle to push myself through it. Afterwards I will crash for days.

The book got me to wondering if perhaps some people (like me) actually do experience the world at a different speed – and maybe that is why we are incapable of keeping up (though people who don’t understand this consider us lazy, and are certain that if we put in the effort we would not only be able to keep up, but get used to it – so not true, for me.)

The truth is that life moves too fast for me.

  • The grass grows too fast.
  • The years pass too fast.
  • The night is over too fast.
  • The house needs cleaned too often.
  • The renovations need done too often.
  • Food needs to be bought and consumed too frequently.
  • Life is just… too much – all of the time!

I am never ready for what is coming. Though I don’t work anymore, I am still overwhelmed most of the time – and when I did work, even part time, I was completely burnt out right from the beginning.

 

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Autism: Horrible Stinky Food

My husband made hamburgers for himself in the toaster for supper. I did notice he was going to do that, but he doesn’t like me to comment on these things, and… what was I supposed to do?

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On the nights that he cooks, I frequently have to wait until supper is finished for him and my son before I can start to make my own – and that in itself is very hard on my system. That isn’t his fault – I just can’t function well with anyone around, including my husband. I do okay with my son there, but my son has been there since he was a baby, and that is not true of anyone else in my life – which is maybe why my son is the only one who doesn’t have such an effect on me.

Oh – I guess I should mention that I am the only one in my house who doesn’t eat meat. I also have a lot… a LOT!!! of sensory issues around food, so what people typically eat (in Canada – but I imagine many foreign foods would be bad for me, too) is not only something I can’t eat, but something that causes me a lot of struggle when other people eat these foods around me.

Hamburgers are one of those foods.

If they are cooked on the barbeque, and the doors are closed, it isn’t so bad. The smell goes away pretty fast, and I can cover my nose while I wait.

Inside, however, is very different.

It stunk up the house so bad I couldn’t block it out with three layers of blankets. My husband, seeing my distress, sprayed room freshener (which made it worse) burned candles, and opened the windows. It still took more than 1.5 hours before I could take the blankets away from my nose.

Molly, (one of my Chihuahuas) stressed out by my struggle, barked at my husband (which she doesn’t do) until I brought her to me and calmed her down.

My functioning, reduced to nothing since I was unable to eat my supper due to my husband’s choice of his (and I begin crashing when my meals or snacks even are even a few minutes late – and this was getting close to 2 hours) left me unable to find food even when the smell had cleared, and my husband had cleaned the kitchen.

Knowing it was nearly time to get my girls ready for bed, and I had to do something, I walked into the kitchen – but I ended up rocking on the floor unable to think. Clara (one of my dogs) and Ditch (one of my cats) came to help comfort me.

I couldn’t deal with my needs, but they needed me, so I got up and got them through their bedtime routine.

I ended up eating a granola bar (which hurt my tongue) two pieces of dried mango, and the tea that my husband brought to me. It wasn’t nearly enough. Not nearly. But it was close to 10pm, and was too late for me to eat – besides, I still couldn’t think of food.

For me, it isn’t true that I “will eat when (I’m) hungry enough.” The truth is, the hungrier I am, the harder it is for me to eat. Even foods that usually work for me are rejected (in my thoughts as well as my mouth, throat, and stomach) when I am too hungry. Foods that are often okay for me frequently cause a very bad reaction if I eat them in those moments.

So I went to bed feeling hungry and weak. I woke up the next morning (having only made it through the night by medicating myself) feeling hungry, nauseous, and weak. In fact, though I did eat that day, it still took me until after I had eaten supper and dessert – a full 24 hours after the issue began – before my body was regulated and felt okay again.

It is really hard on both me and those who live with me when normal things that they do has such a bad effect on me – and what am I supposed to do with that?

 

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