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Autism: Excruciatingly Frustrating

There is this electric piano that I have in my living room It belongs to my niece, who has been… travelling the world for a couple of years. She asked us to store some things for her, and this was one of those things.

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When she brought it, she thought that I would like to use it. At the time (having had little warning these items were being brought to my home for storage) I didn’t know where to put it. I have a keyboard of my own, and so told her we would just store it for now.

Only we haven’t any good storage in this house, and it just ended up on the floor in our basement hallway. Fearing it would be damaged by flooding (the washer has been overflowing at times, and the one side of our home has been leaking, since when the new roof was put on several years ago, they removed all the gutters and downspouts so the water now comes into our home on one side) I moved things around and found space for it in our living room.

I would have used it then, only I didn’t know where she had put the cords and attachments, and didn’t want to go through her things looking for them. I asked my husband to – this was maybe a year ago – but he never did.

I also asked him to NOT use the piano for storing his things as he came in the door – but of course he does. Of course he does. He doesn’t understand me. He doesn’t understand my need for him NOT to do those things.

Anyway…

Another niece who lives in town asked, since we aren’t using it (I would, only my husband never did find out where the cords and attachments were, so I couldn’t) if she could take the piano to use. I don’t mind her taking it. It would give a place where I could bring my keyboard out and actually be able to use it (so long as my husband doesn’t store things on it, which causes me a lot of distress) but I still don’t know where the attachments are. She would need them to use it, too.

I tried.

I tried so hard to explain to him that in order to use it, she would need to ask our other niece (her cousin) where the attachments were, but…

He never seems to understand me.

He never does.

The longer we have been together, the less he seems to hear. It makes me want to cry. It does make me cry.

“(Her husband) is a really smart guy,” my husband told me. “He can figure it out.”

Okay, so I am stupid for not being able to do this?

It isn’t about being smart, or about being able to understand construction, or electrical systems, or… “She needs to ask where the parts are,” I said… but he didn’t get it. “C can figure it out,” he said again.

Excruciatingly frustrating!!!

It isn’t about being smart. I am smart enough to know that what they need is to ask where the parts are – not to figure out a way to not need those parts.

Sometimes he makes me feel like he thinks I am so stupid – when he is the one not understanding what it is I am saying. This is how people have responded to me all of my life – and I try so hard to explain. And it seems to me I couldn’t be more clear. And they think I am being clear – but then they twist my words, or interpret them to mean something they never did – and they are so sure they are right they don’t give me a chance. They just keep trying to correct my correction to fit in with what they believe I am saying…

But I am not! What I am saying is what I am saying. There is no need for interpretation. There is no need to ‘look between the lines.’ It is all right there, clear as day. I don’t know why they can’t understand.

I don’t know why they respond to me as if they think I am stupid. I am not stupid. I know what I am saying – they are the ones who misinterpret.

They have always made me feel like they think I am stupid, and it hurts more than I can express – but he is my husband! He shouldn’t be making me feel that way.

And when they make me feel that way? I become so upset I shut down – which only goes to confirm for them what they believed about me in the first place.

So, so frustrating. So painful. So wrong.

Will they ever learn?

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Autism: Detailed Uninteresting Conversations

One afternoon as I was working outside in my garden (both an enjoyable experience, and an uncomfortable one, since my garden is in the front of my house, near the street) some neighbours were walking by. They had their dog with them – a small Chihuahua – and my girls were racing her along the fence line; they love to do that!

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Though I have discouraged it before (my girls become defensive, and might nip) they brought their dog up to the fence, to see if they might be okay to visit this time. They were not! I really wish people would stop coming right up to the fence. Sure my girls are cute, and it is fun to watch them running the length of the yard (likely to ensure no one comes in,) but they are not good visitors – and it seems they likely will not get over this, though I really try to discourage the behaviour.

Well, they did move their dog away (I wish my girls would visit with her – Gryff, my Pomeranian, loved to visit with her) and the husband asked me if we were having trouble with our vehicles.

At the time, we had two vehicles in our driveway – our 18 year old van, and an uninsured vehicle belonging to my SIL. Both had their hoods up, as my husband was charging the batteries.

“Is (your husband) having trouble with his vehicles,” the man asked. I tried to explain – “the car has been sitting idle all winter, and the van… well, the lights flash as if they are possessed.”

But my explanation wasn’t enough for him, and he kept trying to pull details out of me:

  • do they flash all the time?
  • Which lights flash?
  • If the headlights are turned off, do they still flash?
  • If the lights in the cab are switched off, do they still flash?

On and on he went, and as he spoke – though I realize in his own way he was trying to help – I became increasingly agitated.

A lot of that had to do with him trying to pull from me, and to share so many details verbally. I have a lot of trouble following conversations to begin with. Though I try to listen, my brain can’t seem to hold on to so much detail, and it becomes exhausting when I am forced to try. I am very much a visual person, and much more capable of following what is being ‘said’ if the words are written down. (Pictures are even better.)

Above that, this was not something I was interested in. The lights flashing? That has been an issue for at least 6 years. We have taken it to the mechanic, and I even asked my auto teacher when I was in the trades program at college. No one has given us an answer – and really, since it is my husband who looks after the vehicles, I have no desire to start worrying about that. (I have enough anxiety.)

Part of it was that he was trying to show his knowledge. People seem to do that. But again, I don’t care! It is a vehicle, and I have absolutely no interest in vehicles (unless they are undetectable, self-driving, flying cars that run off solar power, air, or water.) I won’t remember a thing he said (mainly because it was spoken, and not something I saw) and it felt like he was trying to make me feel stupid as he asked so many detailed questions about – again – something I don’t care about enough to pay much attention.

It flashes. That is enough.

So once more, an enjoyable afternoon spent in my garden turned difficult because… people! I wish we had bought a house with the large, sunny yard in the back.

 

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Autism: Not A Great Chess Player

When I was a teenager, I had a friend who wanted to play chess with me. He taught me how to play, and I would look at the board, and know how each piece was supposed to be moved. I would play the game, and sometimes I would win.

For many years I would look at a chess board with longing, yet did not spend a lot of time playing with other people (or playing alone.) You see, while I could imagine myself thinking through the strategies, and playing the game well, the reality was quite different.

I don’t actually have a mind that can focus, or make logical decisions playing such a game as chess. I have a great mind for imagining, and so I am able to picture myself as a great chess player, very much focused and enjoying a game that I have a good chance of winning – but I have found over the years that isn’t actually who I am.

My mind is so great at imagining that I can frequently bring myself to believe that I would be really good at something, and/or would really enjoy doing something, and I can actually hold that belief until the time when I experience it for real only to fail. At that point, I wonder what went wrong. I was so sure that I would be good at it that it never crossed my mind that I wasn’t built for such things.

There are many things in my life that I can imagine myself to be good at:

  • parenting
  • playing the keyboard
  • crafts such as sewing, knitting, painting
  • gardening
  • farming
  • home renovations
  • woodworking

But the reality is that though I have had years of practice and even training in many of these areas, I am still not at all good at them. I suppose I just wasn’t built that way.

And the thing is, because I can imagine myself to be really good at these things that I feel I would love to do and be, I find it incredibly frustrating, and depressing, to be faced with the reality that this is not who I am.

In fact, the majority of who I have imagined myself to be throughout my life, has turned out to be things I am either not at all talented in, or dislike doing altogether. It leaves me unsure of who I am, or what I would like at all.

Four years ago I took a course in Residential Construction (a foundation course for carpentry apprenticeships.) I did really well in the theory side of the work, and well enough on the practical, that I completed the course top of my class (94% average in a class where nearly half of my classmates failed.) Because my entire immediate family (mom, dad, brothers) were really skilled in this area, I could very much imagine that I would be good in it as well. However, despite my high marks, I was not at all equipped to work in that environment. Under such stress, pressure, and exhausting work, my functioning level dropped to the point where I couldn’t do the work at all.

Had I done well, I would have been at Journeyman level at this point in my life, which I imagine would be a decent place to be.

It is the same with parenting. Throughout my childhood, while I couldn’t relate to any of the children around me, I did love children, and babies, and… I could imagine myself as a great parent with a lot of children. I loved dolls. I wanted children. I even took a 2 years Early Childhood Education course at college and graduated with Dean’s Honours.

I ran a daycare. I home schooled my son. I took and passed an adoption home study, and had three high needs children placed with me for adoption. And… I failed.

The truth was, I could imagine myself as a great parent, but most of the time I was overwhelmed. I could not relate to other parents. I could not relate to the social needs. I was overwhelmed by the behaviours. I was not relaxed. I was not calm. I didn’t even like the world enough to feel confident sending my children out into it.

My concern now is in knowing that my imagination is capable of seeing myself successful and enjoying many different things in life that in reality would not be good for me at all, how could I possibly decide what would truly be good for me?

I thought I could be a good chess player, but I am not. So who am I then?

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Autism: If I Were Well

It had been a really rough week. Hard to believe two weeks had past since we lost my son’s nearly nineteen year old cat. The pain was raw, and everything bothered me. I get like that when things hurt; my already sensitive nerves are overwhelmed by every little thing.

I spent the day before steaming with anger and frustration over things that I was unable to express. Communication is hard at the best of times – and this was not the best of times. It isn’t that such things only bother me when things are hard, but that the irritation I am able to suppress and redirect when I am well (knowing that I am very sensitive about such things, so it really isn’t the fault of other people) wants to come out in an explosion when my functioning is low.

The struggle didn’t get shared, however. I am getting better at holding it in until I can find some way to solve it, or express it better. Since my ability to express myself still isn’t close to the level where others can accept what I am saying (or even understand my point) I often find myself holding so much in that I am at the edge of being overwhelmed nearly all the time. The tiniest things can throw me over… even then I rarely explode, but do spend a lot of time alone and in tears as a result.

Though the plans had already been made, I still woke up that morning full of frustration over the things that had bothered me the day before – again, more because I couldn’t figure out a way to solve or communicate the issue than that it was actually the fault of another that I was feeling that way.

The plans had been made with my son, however, and were really important to him. We were to go downtown for a few necessary supplies, and then head out to the local SPCA with the hopes of adopting a cat.

I guess he learned that from me, and I in turn learned it from the loss of my Chiku. I got Chiku a week before my son was born, and she died a week before she turned 16. In the part of my life that I remembered, I had her longer than anyone at that point, and the loss hit me hard. They always do. I was determined that I would not get another cat as the pain was too much. That is the year I ended up adding three new cats to my home!

Then when I lost Gryff last summer, I knew I needed another dog. The pain was intense, and I could hardly even get up when Clara was given to me 15 days later. It hurt, but I knew she was necessary. So when my son lost China, the first week the pain was too much, but he knew that he would need another cat. He learned that from me.

I didn’t think it would be so hard to find a cat at the SPCA (there were 5 he was very interested in from the ages of 2years to 13years old – all were gone before we could even think about getting there) and I didn’t think it would be so easy to adopt a cat from the SPCA.

On the Friday afternoon, six kittens had been posted on their site, and three were gone right away. The three left were brothers, and all three had the personality my son was looking for – so we got there on Saturday half an hour before they opened, and waited in the car.

My husband came with us for all of this, and though in my mind he spent most of his time in the background, the very fact that he was there helped to calm me. He does that – especially when I am out.

In the main room were four kittens, two of them already spoken for. They were really cute – 10 weeks old, and very energetic and curious. My son and I spent quite a while playing with them before asking to see the other kittens we had come for.

We were taken to another room where we were greeted with meows from a small orange kitten. The two orange ones were also spoken for. My son walked over to a cage that was open, and a black and white kitten came straight to him. “He is usually very shy,” the worker said, “this is very unusual.” My son and that kitten spent the rest of our visit together, while I played with his brother, and pet some older cats in the room.

Obviously he is the one we decided to bring home – a six month old tuxedo named “Rocky Road.” (My son changed the name to Nicholas.)

And you know? Despite the pain, and the grief, and the frustration, and all the negative emotions and struggles I was feeling leading up to that moment, I really enjoyed spending that hour at the SPCA playing with those cats. And I thought, “I would love to volunteer here… if I were well.”

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Autism: Breaking the Dependence

Maybe my desire to live a simple life is being met in ways I never considered. My computer is dying; therefore I am spending more of my time writing on paper, reading books, and doing crafts like making my dog a sweater from the sleeve of an old knit shirt: forgotten skills.

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Out of necessity, I rented my first computer for college in 1999. I never wanted a computer; didn’t like them; didn’t trust them. Most importantly I hated the way they made me feel (drained, dull, and trapped.) While my son, who had just turned three at the time, seemed to have been born for computers, that was not the case with me.

When did it change then that a necessary evil, which I used to serve a specific purpose, was suddenly something I depended on for constant entertainment? When did a machine I didn’t even want become something I couldn’t live without?

As I scream in frustration while my computer freezes up for the fifth time in about an hour, I contemplate the question: What do I need it for anyway? I know that for my son, his computer is his connection to a confusing world. I think that in my case, I would live better without it. We do have a library after all, and unlike most public spaces, I enjoy spending time in there.

Then, two days ago as I was standing in the kitchen making my lunch, I heard the sound of pouring water. I turned to my left to find the dishwasher spraying water all over the now flooded floor. As I mopped it up, I again thought, “Do I really need this?”

So I cleaned the floor, and I washed the dishes by hand, and set them back in the dishwasher to dry. My hands hurt after because putting them in water makes them sting – but the kitchen was clean, and I felt really good about that.

The next day I went into town and bought myself a couple pairs of good rubber gloves. We had the repair person in (at my husband’s request) but since the seal was gone, he was unable to fix it. When I was a kid, appliances were built to last 20+ years. I am told that these days, we are lucky to have them last for 5. That makes me angry, for it isn’t about whether they can make them to last so long, but about whether they choose to – and out of greed, they don’t. It makes me angry because I save for 5-10 years, using thrift store appliances that don’t work great, trying to get enough to buy new only to find they die shortly after.

In that case, I don’t think I need a dishwasher. A good pair of rubber gloves, and a few minutes of my time, and the result is a simple solution that calms my senses. That is what I need!

 
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Posted by on November 28, 2016 in Experiences of an Autistic

 

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Autism: Frustrating Technology

In the last week or so my computer has been acting up. It randomly freezes to a blank blue or gray screen, and then I can’t do anything with it. I have to shut it down with the power button – which likely exasperates the problem.

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It isn’t even like I am using a lot of power or anything. It often shuts down when I am doing something like entering my password to get to the desktop, or reading my email. Sometimes I am not even doing that much. Yesterday it happened several times in a row before the icons saying that my internet was ready had come up. I was just waiting.

Other times I can be doing many things at once – playing Facebook games, while loading a movie, while looking through Pinterest, while I have my written blog open on Open Office waiting to be scheduled – and the computer runs just fine. Still it has happened several times a day for about a week. My son says it is likely a hardware problem – the graphics card or motherboard – and I have to replace my computer. It is incredibly frustrating.

Today I had a bit of trouble, but it had been running well for the afternoon. I decided to write my blog, and was on Open Office just about finished when, “blip,” the screen went gray “No!” I cried. I mean, the thoughts just flow as I am writing. It isn’t as if I could remember what was there. Sure, I remember the topic, but I couldn’t possibly word it the same – and I thought I was writing particularly well today.

I fully intended (because this happened a few days ago, though I had only written a paragraph then) to save it every paragraph or so. Once I get into my writing zone, however, all other thoughts go out of my mind, and I just write. So I prayed it had an automatic save feature and would still be there when I recovered it. Of course, it wasn’t.

So now I have turned to paper and pencil (because pens run out of ink, and I can’t deal with more frustration at the moment) as I should have been doing since this began. If this happens again when I am transferring it to my blog, at least I will still have the words.

Technology is not my friend!

 
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Posted by on November 21, 2016 in Experiences of an Autistic

 

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