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Autism: Train Crossing

Well the day came, and since I didn’t have the bus booked I had to take the van. Well, I guess for that part I would have had to take the van anyway, since we only book the bus to take us home. After all, if my husband is going into town anyway, why would be spent $3.50 in bus tickets to take us to the same place at around the same time?

My husband had offered to take us home after, so I wouldn’t have to return (in the dark) at night to pick him up from work when he was done. I don’t like driving in the dark. I don’t like driving.

This was the day I had set aside to do all of my Christmas shopping… well, most. My son was coming with me, so I would have to pick up things for him on another day. Everything else had to get done. When would I get another chance to do it?

I have really been struggling with Christmas this year. All the commercialism makes me feel sick. I look in the fliers and they seem to be telling us that we should be spending hundreds of dollars on each gift (if we really loved our family!) Hundreds! What ever happened to the $20 maximum for the closest people in our lives? Or better, the orange, Christmas candy, and mittens that used to fill stockings a hundred or so years ago.

When did Christmas become about going into debt?

The more I look in these fliers, the more I hate the idea of buying anything. Such pressure. Such greed. This is not what Christmas is supposed to be.

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But like most other people I do have people to buy for, and I don’t want them thinking I don’t care about them. So I went out looking.

As I left the thrift store where my husband works, a train started going by on the tracks we had to cross to get to town. I was first at the stop sign on my side – needing to turn right to cross the tracks. Across from me was the Handy Dart – the bus I had planned to book to get us home. It was being driven by a person my son and I both know. She was first to the stop sign across from me, and had arrived there before I had.

On the road perpendicular to us – the one that crossed the train tracks – there was no stop sign, and there were several people stopped at the train crossing there.

I was sitting there, in the driver’s seat of my van, panicking for two reasons:

  1. Knowing who I was, the driver of the Handy Dart would recognize me sitting in the driver’s seat of my van, and question how I qualified to take the Handy Dart (to be fair, in my application for this bus I did say that I could drive, but that it causes me a lot of anxiety, and I still was approved.)
  2. I struggle with the rules for a two way stop where there is no stop sign in the other direction. She was there first, so I wanted to let her go first – but she was turning left where I was turning right, and in such situations in the past the people turning right went first regardless of who got there first…

Perhaps I shouldn’t care what other people think of me, but I do. I care a LOT! So it bothers me when I think that other people might think that I don’t belong somewhere, or shouldn’t qualify for something, or…

My son said that if anyone had been in the van with us, they would never question that I should qualify for the Handy Dart (he has also said that in the past while we were standing outside the thrift store waiting for the bus, and I was so anxious I couldn’t think – to be fair, the bus never showed on that trip, so the panic was justified – I ended up having a full meltdown then.)

Anyway, I hesitated for a second, and when she didn’t go, I did. But the panic never let up.

I wanted, and had planned to get all of my Christmas shopping done that morning, but after the experience I had waiting for the train at that stop sign, all I wanted to do was be home with my girls. We did go to every mall in town (we live in a small town, so when I say mall, there are only a few stores in each) but I didn’t get any shopping done.

I couldn’t.

And the rest of the day I was anxious, teary, and emotional. Sometimes I think I shouldn’t be driving at all. It is all just too much for me.

 

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Autism: Sometimes I Can’t

I had the best of plans for the day. I even knew in enough advance that I wanted to go that I could (should) have booked the bus, only…

On the Monday, the day I was supposed to phone, we were waiting for a visitor. We. My husband was home. I was glad he was home because I had a visitor coming, and I struggle a lot with such things. He helps. Only when he is home I can almost never do… things. Like housework, or phoning people.

Phones are hard for me. Really hard.

When I have to make a phone call, I need complete silence. I rehearse over and over what I am going to say in my head, and I write it down just to be sure, and I panic before I pick up the phone and dial. I can’t do that when someone else is around, and my husband was home from work that day (having switched days off with a coworker that week.)

So my husband was home, and that was difficult – for making the phone call at least.

And we were waiting for a visitor.

It doesn’t exactly matter who the visitor is, or how long they are going to stay, or what they are coming for – expecting someone to come to my home causes severe anxiety for me. Another thing that is really hard.

Sometimes it is worth it – like when my friend comes over every other week. I like visiting with her, and I know exactly when she is coming, and exactly how long she is staying. Though I still panic before, and crash after, I am always happy that she came.

Other times the visit is necessary, like when I have people coming over to fix my windows, or install new light fixtures, or… then, though they may only be at my home for half an hour, and though I might know approximately when they are coming, I still panic before and during – and though it is a short part of my day, I am exhausted for days after.

Then there are times like these. The visitor was the previous owner of all three of my dogs. When they gave us Misty-Grace, they asked my husband to keep his eyes out at work (the thrift store) for dog blankets, cushions, and such. They run a kennel, and have multiple dogs of their own. So we had collected a large stack of such things for them – and they bought a sleigh for us (one of the wooden baby sleighs for walking on the snow – since my dogs frequently prefer to be carried to walking.)

He was coming to exchange the items and see my girls. It was fine. I was happy he was coming, but anxious and panicky as always. We didn’t know when he was coming. He was driving from out of town, about an hour away. We didn’t know how long he was staying.

So we waited. And as I waited, knowing I was supposed to be making this phone call to book the bus for a trip I already knew I wanted to take, my panic grew.

In that level of anxiety, I can’t function. I couldn’t make the phone call. I couldn’t do anything at all. I was dizzy, and numb, and panicky.

By the time he arrived, it was 4 in the afternoon – and the bus place closes at 4:30. I knew through the day that I should be making the phone call, and I kept looking at the phone and trying to work up the courage, but I just couldn’t do it.

I had to do it. I wanted to do it. I remembered it needed to be done. I knew what I needed to ask for. And still…

Sometimes I just can’t.

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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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Autism: Candy Crush

I spent the entire morning, or just about, playing Candy Crush Saga on Facebook. They gave me unlimited lives for two hours, and at that moment it became absolutely essential that I distance myself from the person just behind me (who caught up while I was away at the lake both times.)

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I kept going and caught up with the only person on the board ahead of me. She passed me several months, or more likely, over a year ago.

When I passed her, I wanted to distance myself from her as well.

It becomes a compulsion. I just have to do it, and much as my mind is screaming to stop, I keep going. I am not competitive. Not at all. The thing is, though, that I don’t like seeing other people on the board with me. I don’t know how I managed in the beginning when the board was filled with people around me, but at some point I found my icon alone on the board, and felt like I could breathe again.

It irritates me to see other people there. I don’t know if it is the clutter of the board, or… More likely when people – or even icons – are around me, I feel watched. I can’t function well when I feel watched, and it always leaves me feeling anxious and irritated. It is like having someone in the kitchen when I am in there; I just can’t.

Only I am not competitive. It didn’t bother me after she had passed me far enough that her icon wasn’t on the board with me. It was only when it was there that I had to get past.

So I spent the morning playing Candy Crush on Facebook. It is such a waste of time, and most of the time, I don’t even enjoy playing. I keep telling myself that I will stop playing – someday. But there again is one of my fixations that I can’t seem to overcome.

I am on something like board 1900 (higher, really, but I don’t want to open it right now to check, or I likely won’t complete this post.) So I think, knowing me, is the only way I will give up the game is if either I complete it or it stops working on my computer.

 
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Posted by on October 13, 2017 in Experiences of an Autistic

 

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Autism: Learning to Can Part 1

It started out with plums. Lots of plums. Our tree was full this year and… I had to start somewhere, so – plums!

The pressure canner I ordered back in August never came in. I waited and waited, and then went camping – but my son was still home and he watched for it. It was in Edmonton, and was supposed to arrive here the next day, but never came.

Did someone steal it? Ugh people!

It isn’t like we live in a poor neighbourhood. We likely live in one of (if not the) oldest and least expensive homes in our area. We are surrounded by doctors, teachers, nurses, business owners… We may not have much, but the people around us do – so if it got here and they stole it??? I don’t understand that.

Perhaps it never made it this far – but then… it was fed ex that had it (I think; might have been Purolator.) Did one of their workers take it?

So I got back from vacation and was stressed out to find it had not come in. I emailed Amazon about it, and they said they would send another. Then I learned of ‘my baby,’ and everything else dimmed in comparison. I struggled for many days and then one day woke up deciding this was the day I would harvest plums and try canning for the first time.

I guess when most other people learn such things they turn to people who know what they are doing and learn from them. That isn’t me. Working with other people presses on my heart and mind that I am not good enough. I don’t belong. They may not be thinking the same thing; I will allow for that. When I am with other people, however, I get attacked – in my head, in my heart, all around me – and I just can’t.

Though I am sure most other people don’t understand this level of anxiety or isolation, I am sure that if they experienced anything similar – like perhaps they received an electric shock every time they got something right, they would be afraid to keep going, too. Not that I get shocked – but it is like that. I get attacked through thoughts and feelings. It makes it so hard to function that when other people are around, I really can’t function. Not won’t. Can’t. I drop things, I spill things, I make mistakes. I can’t think for the shouting in my head (that I am working so hard to silence) telling me how stupid I am to think I belong there, or could do… anything.

So I don’t. Other people work, and serve, and do things with other people – and when I am there, I sit, or I try to hide in a corner and become invisible.

It has to be this way, it seems, for I am not strong enough to silence the attacks – and the attacks always come.

This means that if I want to learn anything, really, I have to learn alone. I seek out ideas, research, study, spend an inordinate amount of time fixated on the subject, and then one day I will just try.

Well, knowing I was interested in canning, my husband brought a huge water bath canner home from the thrift store where he works. I mean, it was huge! It took up two burners on the stove. I had all these plums, so that is where I started. Over a couple of days I made 24 jars of canned plums (and got at least that amount again in fresh plums, some of which we brought to my husband’s work and gave away.

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Autism: Rather Than Feed The Greed

After years of consideration, and many days spent going back and forth between being absolutely sure this is what I wanted, and fearful that it would only add to the number of experiences I had failed at, I finally gave in and bought my pressure cooker.

With research, I chose the smaller model – despite only about $2 difference for the larger capacity one which would hold 7 quarts more! After all, it would be used mainly for myself and my small dogs – and I would likely be overwhelmed doing large batches. Plus, aside from holding a few less jars at a time, the determining factor came down to whether or not I wanted to use it to hot water bath can quart jars, since that wasn’t an option in the smaller size.

While my husband and son might share some things if I canned them – cherries, pie fillings, etc. It is highly unlikely we would want to open a quart of anything at one time. We just don’t eat a lot of the same things.

Besides, the larger model would take a lot more power, and a lot more time to operate – which in the long run would end up being a lot more than the original $2 difference.

Even then I wasn’t sure. I have failed at so many things… not so much because I was really bad at it to begin with (or any worse than any other beginner) but more because the longer I try to do something, the more guaranteed it is that my confidence and energy will give out on me.

Short projects of a few days to a couple of weeks, with a definite end in sight (and no further obligation after) are much more likely to be met with excitement and success than something I have to do week after week for long periods of time – and anything without a clear end is pretty much doomed to failure from the beginning.

But there was still more to the decision than a matter of failure. I am not one to just spend money – I know that since my bankruptcy pre-marriage, many people still respond to me as if I were bad with money. Yet I have never been a big spender, and every purchase is given much research and consideration both before and after the purchase. My challenge isn’t that I have a problem with spending, but much more that on my own, I am not capable of making enough money to live on (no matter how thrifty I am.)

Now, it may be somewhat different with items I get from the thrift store – especially during bag sale – but I still have to think about everything I bring into my home (for clutter weights me down, and is a constant source of stress for me.)

And whatever I choose to do, and whatever I choose to buy, it must be in line with who I am.

Since the capitalist society in which I find myself appears to be built on encouraging and measuring success on greed – which lies, and cheats, and allows people who haven’t the money to pay for food or medical treatment to die – is the complete opposite of what I believe, I really must make my choices based on something that doesn’t feed that greed.

So while I am enjoying (if it can be called that) the ability in this society to earn gift cards towards ‘something for myself’ I still feel an obligation to spend those gift cards wisely.

Now what is ‘true to me’ is that I feel we’ve drifted far from what is important, and to live well, I need to get back to that – back to the basics. And in the end it was that which made the decision. The money and time spent now learning to grow and preserve my own food can only help me to live in a way that is good, and honest, and true.

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Autism: On Taking the Initiative

“Just get in there and try,” he told us. “It doesn’t matter if you make a mistake (though you are sure to hear about it) so long as you are actively participating.”

But I didn’t know what to do. I didn’t know how to do it. I had never seen it done before – and even if I had, I needed to ensure I understood it completely before I tried to do it in front of a group of people… or even just one if he was prone to yelling or criticizing.

So I held back. Again and again I held back and let everyone else try first. I learn first by observing. It isn’t until, through that observation, I understand it that I will try to do it on my own.

Such was always the case.

The most common comment on my report cards growing up was, “Does not participate.”

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Of course I didn’t participate. First of all, I get paralyzed when other people are watching me – so a classroom of kids was not the place for me to try anything. Maybe if they showed me how, then left me to work on it alone, but that isn’t often how things are done.

So I was seen as incapable; maybe I was. I sure came to believe over time that their assessments were correct.

Or maybe I just couldn’t learn the way they were teaching – or maybe I just couldn’t demonstrate that I understood what they were teaching because, well… I get paralyzed when people are watching. That hasn’t improved in time.

So I can’t learn well in groups, and I can’t just ‘jump in and take the initiative.’

There is the word: initiative.

I have been thinking about this quite a bit over the past few years – especially since I was in my Residential Construction course at the local college; for ‘taking the initiative’ was strongly… not even encouraged, but expected.

This is something I am not at all good at. I need to know exactly what my job is, what is expected of me, how I am supposed to do it, where things belong, how things are supposed to be, what the rules are… I have to know.

If initiative is what is expected, I am overcome with anxiety, and can’t move – or think – or act – or…

I have also come to the realization that although I know ‘initiative’ is valued throughout society, it is not something I value in other people. I mean…

While I am thankful if people try to do things that are helpful to me, just… mostly when people do things ‘for me’ it really seems to be based on who they are, not who I am. So it comes out… wrong. All wrong for me. And I get… thrown off… and they get upset because they were trying to help, but it didn’t help. So I think, “why didn’t you just ask?”

Just ask.

I think that a lot of the reason I struggle in ‘taking the initiative’ is because I am sure that what I chose to do, or get, or… whatever, would not be what they had in mind – just as when others jump in without asking me how I would like it, it isn’t what I had in mind; and therefore I then have to find some tactful way to tell them (without offending them) that what I needed was different than what they did; and I struggle to communicate good things, and feel completely incompetent in communicating harder things like this.

 

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Autism: Something to Help

The thing is, I have been super panicky for close to three weeks now.

I keep thinking: if I just get caught up on my blog posts; get the housework done; clean up the yard; get rid of the clutter; find some purpose… then I will calm down.

And I go to do… whatever, and I start of okay, but very quickly grow overwhelmed because, well… I am panicky. So I get a little bit done for the day, and can’t do anymore – which of course feeds my guilt.

So I look around, completely hating myself because other people (all around me) get these things done. And here I am – no job, no children, hardly any social life to speak of – maybe just among the least obligated people I know; and I am so overwhelmed, I am in shut down mode just about all the time.

I have crashed so frequently in the afternoons that my dogs now come to me early every afternoon begging for ‘nap time,’ because… I don’t remember the last time I didn’t go in my room for a nap – and even then the panic won’t let up enough for me to sleep most of the time. And when I have gotten to sleep in the afternoon, I just wake up feeling worse.

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In determination I walk over to my computer, completely convinced that I will get my blog posts written this time. I sit down, and am again overwhelmed by the anxiety, and instead go on a Netflix binge watch – because my mind won’t settle enough to think.

Trying…? Not the best solution to this. The harder I try, the more incompetent I feel, the more I panic. In fact, the panic grows the moment I try – before I have even failed yet.

So I ask myself what it will take to get through it this time.

For this is not the first unexplained severe anxiety episode I have experienced. Sometimes it lasts hours, sometimes it lasts months. While I am in it, my functioning is drastically reduced. I feel… scattered. I worry about my sanity. How long can one person’s mind endure such levels of fear before it breaks?

And I think that the hardest part is, I don’t even know why I am so anxious. I just want it to end.

Feeding into this anxiety is night after night of very vivid dreams in which I am trying to repair some situation in my past – and I wake up not quite oriented to the world I now find myself, saying, “yes, please let me do that.” And day by day the panic grows.

I suppose that since I am so badly effected by all anti-depressant/anti-psychotic/anti-whatever medications – not just with bad side effects, but the fact that they have the opposite effect on me to begin with – that I will just have to endure it. I just wish I could find something that would help.

 

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Autism: Stess on Functioning

I suppose that when anyone is under a lot of stress, they don’t function at their best. For me, however, I might as well say that I don’t function at all.

  • I can’t think.
  • I can’t focus.
  • I can’t make decisions.
  • I have little impulse control.
  • My anxiety skyrockets.
  • I can’t cook.
  • I rarely clean.
  • I can barely move.
  • I cannot speak.
  • I cannot hold a conversation.
  • I can’t follow directions.
  • I forget most of what I know.
  • I fixate on the issue.
  • Nothing exists beyond right now, and right now is hard.

Of course this is somewhat expected, for a short time at least, when something really bad happens. Lost your job? Okay. Going through divorce? Okay. Death of a close family member? Okay. For a while. Okay. Only people forget really fast. That, or they expect grief to be brief. For a family member (human at least), who is very close, they may even give time off work. A day. A week maybe. Then you’re expected to be right back at it – as if your world didn’t just fall apart beneath you.

And like everyone else, I grieve during those times. The stress is hard. I don’t function well. But it seems to be much harder for me to overcome those things. It takes a lot longer, and I just don’t pretend well.

The summer my first cousin died, my dog died, my grandfather had a heart attack, and went in for a triple bi-pass, and my son’s father and I broke up… that was a hard summer. My son was 14-17 months old during that time. My little cousin, that I was babysitting, was 7 months younger. I had always been good with babies.

Babies and animals. That was my thing. But take all of the list above, with all the major stressors I was going through at the time, and add in two babies… I didn’t do well. It was hard to even stay awake, let alone supervise well. They both survived that summer. I am thankful for that. But I didn’t do well, and it took me years to get over it. Even the stress of that time took me two years to get past. Two years in which I was in deep depression, and afraid of everything.

Two years. My aunt and I both had to start work again right away. We had to, but I shouldn’t have. Expected, but not right. Not for me. And I didn’t do well. Not for a long time.

It isn’t just the negative stress in life that effects me that way, I have found. When I got married, I took a week off. I should have taken a month. I was babysitting then, too. Nothing bad happened, but I certainly didn’t do well.

Or there was the rather neutral stress of coming home from a three month vacation to visit family with my four children in tow. We were happy to be home, but it was a transition, and transitions are stressful. My younger three and I, and especially my middle daughter, had such a time with that transition. It didn’t help that my guinea pig died within days of getting home, though he wasn’t yet a year old. Her stress, and my stress lasted five weeks – at the end of which, our adoption fell through, and ‘our’ three younger (foster) children were moved from our home. We got them back for a year, but we never overcame it.

I suppose, if all of us knew how I handled (didn’t handle) stress, we should have instead had a lot of help during those weeks. Then maybe we would have survived it.

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For when I am under stress, I can’t function. It isn’t “if I try hard enough,” or “if I push myself through it.” I can’t. I can’t do it. And a day, or a week off isn’t going to help much. For me, it might take a month, or it might even take several years, before I am strong enough to live, or work, or be myself again. And that, I have found, is a necessity – not a choice.

 

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