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Monthly Archives: September 2016

Autism: Missing the Fair

For years I have wanted to go, and it wasn’t an option. For one thing, I had no one to go with; my husband and son don’t like such things. For another, it was too expensive – something like $11-15 for something that I would only stay at for a couple of hours. Even if I could bring myself to spend the whole day (which I couldn’t, unless maybe they allowed me to bring my dog – which they don’t) that would still be too much to spend.

This year, however, they had a deal for the opening day. If we went in before 5pm, the cost would be $5. Much more reasonable. So I made the plan, and fully intended to go.

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The fair opened at 10am, which meant I had an hour from the time I dropped my husband off at work, until I could go in. It still seemed like a good idea. After all, the reason it was so cheap on the Friday was because not a lot of people would go then (what with school and work and everything.) If the crowds weren’t so bad, I might be able to manage longer – besides, I really wanted to go.

During that hour before, I made plans to do some shopping. There was a sale on laundry detergent at Walmart, so I would go there to get that. Then the farm store had a sale on the dog food that my dog eats – well, more a free exchange than a sale. That food is super expensive ($17 for 2kg!) but if I had an empty bag of store brand dog food, I could exchange it for a free bag of this expensive food. Great deal!

The expensive stuff is the brand my dog was on when she was given to me. A large Ziploc bag of the kibble came with her – but we were running low. I have actually been making homemade food, and only giving her maybe 1/8 cup of the kibble each day (that is about all she would eat – she, of course, wants homemade.) Still, $17 for 2kg is a lot of money, so I would have to at least mix it with something else.

Well, we didn’t have another bag to exchange, but if I went to the grocery store and bought some, I could empty it into a container, and bring in the empty bag. I did research, and found a comparable brand with good reviews (plus $11.50 for 3kg is a bit better priced.) And I did that. In the hour before the fair, I went to the grocery store and bought one bag of dog food. I talked to the cashier a little (because I used to babysit her son when I first moved here.) Then I went to Walmart, because it has a traffic light coming out to help me turn on the highway. Then I went to the farm store, where I had to talk to the cashier in order to ask for the free exchange.

By that time, I had been away from home for more than an hour, and I was starting to feel it. My anxiety was high, but I still wanted to go to the fair. After all, it was a decent price, and when would I get another chance?

I parked at the back of the shopping centre, and walked up to the fairgrounds just behind. As I got close, there was a farmer’s market full of crafts and farm grown food. I walked through that (because I like to) and it was at that point I felt I really needed to be home. So I drove back to my husband’s work, where I dropped off the van, and then walked along the nature trail home (forgetting there was a warning of a cougar sighting on a nearby trail the day before – but that is another story.)

When I got home, I crashed, and actually slept for the afternoon (did I mention that I couldn’t sleep the night before for anxiety over having to talk to cashiers in the morning?) Normally I can’t nap during the day, but I slept deeply for 2.5 hours. When I woke up, I very much regretted not having gone to the fair.

After that, there was no option to go, as the price was once again too high. It makes me sad sometimes how much my anxiety interferes with life. But when my brother in law (who is staying with us for a few days) asked me the next morning to go to the parade, I picked up my dog, and went – and I enjoyed it very much!

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Autism: One Short Email

The thing is, even being content or happy doesn’t shield me from the effects of receiving an email like that. I even allow that she might not have meant it the way I read it. But the pain, and the panic, and the after-effects were as strong just the same.

That morning, I was exceptionally happy – for me. I rated my depression as a five out of ten (and considering I have only gotten above a five a couple of times in over a year, that is really good – for me.) I was doing so well, and I was accomplishing so much, and then out of nowhere came this email.

I won’t say exactly what it said, as it both isn’t important, and will trigger me again – but it basically said, “You are doing it wrong.”

There.

Conflict. Criticism. I just can’t do it.

Small as it may seem, it is a huge trigger for me. I mean, big. I did mention I have Post Traumatic Stress Disorder, right? That does come from a traumatic childhood, but it was healing. Triggered at times, but not in all I did. It was getting better.

But then I had three children removed from my home in a failed adoption – and the trauma from that is so bad that one small encounter with a stranger, or one sentence in an email can take me from the most contented I have felt in months, to hiding out in tears for days after.

“You are doing it wrong.” Those weren’t the words she used, but it is the same thing. It wasn’t even about something that is absolute – just like with the children’s ministry – one theory, one opinion, in a world full of them. What makes them right?

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Only power. But power doesn’t make a person right, it only gives them the ability to destroy those that don’t have it. “You don’t agree with me? I will crush you.” And the thing is, they can. Forget this, “what can they do?” for I know what they can do. They can crush me – and they do. Again and again.

And what can she do? She can take back what she gave to heal me. I have never even met this person, and she has the power to destroy me, because in a moment of overwhelming pain I agreed to accept a gift from her.

Yet from my childhood, and from trying to adopt my children, I know. I know that any gift given can also be taken back. And any gift that isn’t taken back still gives that person so much power over me. And with that power, they can (and do) crush me. And it terrifies me.

So one line, in one email, can set me to days of panic attacks and tears. One comment can set back months of healing, and cause more fear than I can express. People want to believe that other people are resilient – that what they say and do doesn’t matter, really – but not all of us are. Not all of us. Many of us have been through so much already, that we just can’t take any more. And what have we learned? That other people have power. That other people can and will use that power to destroy.

Maybe she was just making a suggestion. Maybe I took it too hard. The next email said how well she thought I was doing… but then, the children’s ministry did the same thing – over and over – and they destroyed me, and then blamed me for being too stressed out working with them.

So what can one person who disagrees with me do? More than I hope any other person has to experience. One line in an email. One line. And the fear, and the trauma, and the social anxiety, and the desire to isolate myself grows in leaps and bounds. For what could they do, but take away the life line they threw to me, and leave me to drown.

 

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Autism: Amazing Day!

What an amazingly wonderful morning I have had!

Okay, I don’t write posts like this very often, but every once in a while what I do matches up with who I am, and this is what it feels like!

It is September. I love September! I have mentioned that in the past, and I will say it again. This is my favourite time of the year… yet… is it dissatisfaction to say I always wish I were still a child starting school at this time of the year? I don’t mean kind of wish I was a child, or kind of wish I were starting school – but really, truly.

me at 7

Though I look it, and try hard to speak it, and try so hard to fit into the world that way, I don’t really feel like an adult. I don’t mean I wish to go back to my childhood – no way! That would be horrible. And I imagine that many children struggle, and childhood isn’t always what we idealize it as. Childhood can be hard! I can attest to that.

Children, however, are so full of potential. They haven’t failed yet. They could grow and learn and do and be anything. It is as we grow that the world folds in on us, and puts us in this little box – and if we spill over the sides, or we don’t quite fit right, or the box tears at the edges, we are told we have failed. And that potential that we are born with is reduced to lies and labels that others place on us, or that we place on ourselves.

  • Liar
  • loser
  • failure
  • broken
  • evil

And the chance to be, or to do, or even to try again is taken from us. And we are compared to others who are better than us. Why do we have to be compared? Why can’t we just learn on our own time, at our own pace? Not failures – just… not masters yet. Yet. Not forever. We can learn. We can grow. Let us out of the box. Give us a chance. I wish I were still a child.

It isn’t even exactly like I would like to be going to school – with its forced learning, on external schedules, and being tested and compared to others in the group. Again, why do we have to compare? Why does it have to be a competition? I am not them. They are not me. Why do we have to learn the same?

But provide the materials – the books, the games, the crafts… let me choose what I want to learn, and when I want to learn it. Their tests won’t tell what I know (only how much I could memorize for a short period of time.) They won’t show what I am interested in, or what makes me happy. They won’t show who I am. Don’t put me in a box – let me grow. Let me soar!

Today is Monday, September 5th, 2016. It is Labour Day in Canada. A holiday, and the day before school starts for the kids. But who says I can’t learn and grow on a holiday? It is September, and I was eager to learn. So I took out my books this morning, and began. Though I tried to plan, this morning I didn’t go with the plan. Instead, I took out one book, which led to another activity, and another.

As I write this, it is just after 12pm. I took my dog out, and fed her breakfast. I had a nutritional shake for breakfast, plus some tea and a homemade larabar later on. I went outside, and pruned our huge maple tree so that it wasn’t hanging low over the road.

In between all of that, I took out the materials I already had at home, and learned. And this is what I did:

  • Christian Devotional (“Lord, I Want to Know You” by Kay Arthur)
  • Calligraphy
  • Latin (Latina Christiana – or Latin for Christians)
  • Grammar (Harvey’s Elementary Grammar)
  • Reading music for my keyboard (Music in Me – Level 3)
  • Spanish (Duolingo)
  • Writing (this is my third blog post this morning.)
  • Dreaming (this should be a subject.)

Even with all of that, I had time to:

  • think (so many ideas went through my head this morning. I love that!)
  • laugh at my dog, and take her outside a few times
  • listen to classical music and nature sounds
  • check my email
  • read through Facebook

And after all of that, I still want to:

  • ride my exercise bike
  • go swimming
  • go for a walk
  • do a craft or other activity

Not that I will. The pool is closed today, and it is raining outside. Still I want to. That means that what I have done so far doesn’t feel overwhelming to me. In fact, I feel so good, I could do more. I could even, maybe, visit with someone! Amazing!

If I were a child, this would be enough. Since I am on disability, and only because I am on disability, I can do these things that are so healthy for my mental and emotional state. But why, I ask, is this way to spend my time not valued so much as if I were, say, out in a factory making buttons? Or going to school, and getting a degree? Or standing in a store selling…? Only because I am not paid for it. But who determines the value of what people do anyway?

So many things that people do for money are just pointless activities creating things just to make money. Where is the value in that? I can’t live like that. For me, learning… learning is life, and what I am doing here is of more value than anything that I could do out there. And that is why I wish I were a child. And this is who I am. And that is what made this morning so amazing!

 

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Autism: Don’t Need Real

I keep looking for it, but it isn’t available – at least, not where I live. Of course, it is such a new thing, and probably doesn’t offer what I am imagining yet. But if I can imagine it, someone else must have, and perhaps they can make it… soon, please?

While I would like it at home, I probably couldn’t afford it. So someone (not myself of course) would have to invest in it like a business. Like one of those old fashioned arcades they had when I was a kid… But then, I didn’t like arcades. Yet I think I would like this.

In order to feel safe, I would like it in individual rooms – or some things could be in a machine like a motion simulator, where there are several seats facing a screen instead of individual goggles.

Of course I am talking about virtual reality.

I wouldn’t use it for games like I guess so many would. I get scared watching regular games played – imagine then how I would feel about them in virtual reality! No thanks!

I would like to use them for travel experiences. I would like to visit all of the famous places in Israel, Greece, France, Italy, England… all over the world – just as if I were there, but without ever having to leave home.

You see, I don’t need real. I just need it to seem that way.

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So while I am not very much into new technology, and hardly keep up with the newest things, this excites me.

Traveling is hard for me. Not only is it expensive – too expensive for me to even consider much of the time – but it also causes me a lot of fear and anxiety. I am afraid to travel, either by car, or plane, or… and besides that, I get motion sickness. I am afraid going there, and coming back. I am afraid being there, and struggle with the crowds, and with the sounds, and with the smells. I can only handle so much. I am afraid of the food. If I struggle while at home, how much more will I struggle with a different culture and language? I can’t handle change.

So for all of those reasons and more, travel is too hard for me. I can’t enjoy my trip until it is over – and so much is missed with that level of anxiety. But with virtual reality, I could go, and be home, all at the same time. How great would that be!

I would use it for traveling through fairs, theme parks, and amusement parks. I would use it to watch theatre performances, and ride on roller coasters. I would use it to live.

Okay. The idea of using a cell phone for this makes me nervous. First, I don’t want to own a smart phone, or a cell phone, or whatever. Second, if these things cause cancer, I don’t want to have them hovering over my eyes for hours at at time. That would be bad!

There is no way I could afford the computer that could run it, or all the equipment that would go with it – but if someone else invested in these things that I could use at a cost (like a season pass, or a daily pass, or something) I would go. I would use it. And I would really love to have that available to me. Especially in a small town like mine where I have to travel far to get to anything like that, meaning I really can’t experience it for real. And for real, with my autism and anxiety issues, is often just too hard.

But this idea? I can’t wait for someone to bring in something like this that I could use!

 

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Autism: A Job Like That

The button pusher in Lost. I could do a job like that. I would be so good at it!

4-8-15-16-23-42

Every 108 minutes, type those numbers into the computer, and press “Enter.” Save the world.

I would love a job like that!

Because 4+8+15+16+23+42 = 108, so press the button every 108 minutes. Perfect! Got it! I could so do that job!

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I would love to live in a place like the hatch. Okay, I like nature, and I like being outside… but as long as it feels like outside, I could live with that.

  • Bright lighting.
  • Healthy, living plants.
  • My dog and cats.
  • Some fish in a tank.
  • A pretty wall mural – or a screen with nature scenes and sounds.
  • Nice smelling candles.
  • A camper style dining set with a realistic outdoors picture on the other side (maybe one that changes at different times of the day, or different seasons) and appropriate lighting.
  • An exercise bike and re-bounder.
  • Music – a machine that will play mostly classical music, or instrumental Celtic, and sometimes other things.
  • A large, built in bed, with bookshelves on the end, and maybe another window with outdoorsy pictures and good lighting (maybe on a dimmer switch, so I could change it for the time of day.)
  • Things to learn, like school type books and games.
  • Things to do, like crafts, and cards and things.
  • A huge pantry filled with foods that I could eat, like jars of canned fruits and vegetables, dried grains and things. (But no Kraft dinner, mushrooms, or gross foods like that.)
  • Maybe a circular type hallway for walking – filled with cedar shavings, and indoor trees, and a bench with a raised flower garden to sit in. It wouldn’t have to be big – just nice.

And my job would be to save the world. Every 108 minutes, press the numbers into the computer, and press enter. 4-8-15-16-23-42.

I could live like that forever. So cozy. So safe. Even if it wasn’t safe, it would feel safe, and I would love that. I wouldn’t have to go out. I wouldn’t have to visit. I couldn’t leave – but I wouldn’t feel trapped. It would be so, so beautiful!

Why can’t I find a job like that?

 

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Autism: Food Obsession

I am not even a “food person.” Most of the time, I don’t even like it. Okay, I do like chocolate, and pop, and… sometimes that is about it. But I get sick fast when I don’t eat well, so it isn’t like I can survive on that.

My relationship with food is so bad, that if I didn’t need it to survive, I would probably… I would probably get a divorce from it. Food. Bad. I have always struggled with food. It was likely worse as a child when I had to eat what I was given (typical Canadian kids meals – hamburgers, Kraft dinner, hot dogs, sausage, spaghetti) and I still can’t eat like that. I complained of an upset stomach a lot of the time (little surprise, my stomach still hurts a lot of the time) and wasn’t able to speak enough to explain any further. They didn’t believe me. It wasn’t “normal.”

However, I still have a lot of trouble with food. Though I can choose my own now most of the time, and though more people understand about allergies, sensitivities, intolerance… I am now an adult – and expected to behave as such (meaning not hiding in a corner crying because they are having hot dogs for lunch, and I have eaten so much wheat I can no longer think to find something of my own.) Being an adult makes it hard in a different sort of way.

So no. I am not a “food person,” and yet I spend so much of my time obsessed with food. This is likely not because I like it, but… you would think that by 40 (which I will be on September 25th) that a person would have learned what foods they can eat, and what makes them sick, and what they really, really like. I don’t, though.

I know wheat makes me sick, and dairy makes me sick, and if I eat eggs, I will likely stop breathing. And meat leaves me feeling sad, anxious, guilty, and disgusted. Those are important things to know. Still I don’t know what I like – and if I like it today, I don’t know that I will like it tomorrow – and if I like it at home, I don’t know that I will like it when I am camping – and…

You see where the problem comes in?

I just can’t seem to figure this very basic thing out. How do I eat? And that one question becomes an obsession, and a fixation, that though I am most definitely not a food person (I won’t even try new things unless I choose them – and if I go to a restaurant, no way will I try something other than that one thing I know I can eat – and if I go to a new restaurant… I will likely look at the menu until I am near tears, and then leave if I can, or eat nothing but fries if I have to)

So I write about food a lot – not because I like it, but because at nearly 40 years old, I still haven’t learned how to eat. And that is a problem. A big problem – and one that affects nearly every decision that I make.

Today for lunch I ate gluten free tempura battered fried tempeh with fried onions and kosher pickles. Why kosher? Because I sent my husband out for pickles, and he doesn’t eat them, and I guess that is what he thinks of the sort of foods I am willing to eat. (I like them by the way.)

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Why did I do the tempeh that way (and why do I eat tempeh anyway?) Because the last and only time I have eaten tempeh (which I heard several vegans say they really liked) I was camping, and didn’t like it at all – but it was expensive (nearly $5 for 14 slices) and I couldn’t throw it away. So I battered and fried it like chicken strips – and other than the smoky flavour it came with, I liked it fine. But that doesn’t mean I will ever try it again. After all, it isn’t something I usually eat, and lentils are less than $1 a can.

When I was a kid and I couldn’t eat (most of the time) and my dad was away (because he believed children should eat what was on their plate) my mom would give me baby food in the form of jars of pureed berries, or pablum mixed with sugar and milk. That worked for me until my 20’s when I thought I should probably find real food to eat. But when I went back, baby food had changed so much I didn’t even recognize it – and change? Is never good.

So the question remains: What do I eat? And this is why I am obsessed with food.

 

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Autism: Compulsive List Writer

It is very rare that I write grocery lists. Even when I do, I often forget it at home, or forget that I have put it in my pocket. Then, if I do write the list, remember to bring it, and remember to look at it, I still often don’t buy everything on the list (usually because the prices are too high – as I have mentioned in the past, I struggle with inflation. As far as I am concerned, once I am used to a product and a price, I don’t want it to be changed. Ever!) Grocery lists rarely work for me.

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To do lists are frequently overwhelming to me. If I take the time to write them, that is about all I have the energy for. I will then, being overwhelmed and exhausted, look at the list and do nothing! To do lists tend to leave me crashing and perseverating (often on the internet.) When I worked, I often had to use to do lists in order to get everything done – but then, I was nearly always overwhelmed at work, so I still wouldn’t say they were successful.

When I am going away, I will write packing lists. But then I more often than not forget to use them (or pack them away!) when I am trying to pack. It isn’t that I mind writing the list, just… it is enough to pack let alone to follow a list, and try to keep things in order in my head. Packing lists might help in that the writing itself helps me to remember what I need to bring, but I don’t exactly use them properly.

If I come to a list that I have to read (especially out loud) I get frustrated, stumble over the words, accidentally skip parts of it, and will often shut down. I hate lists that other people have written Complicated recipes or instructions are hard (give me pictures, please!) and if other people give me a list of things to do, I fall apart. It doesn’t help that in such situations I already have lists repeating in my head for what I am supposed to be doing to such a degree that having one more thing added will make it quite impossible for me to follow through on any of it.

Despite all of the above I write a lot of lists. I always have. But they aren’t the sort of lists that other people use – to remind them of what to do, or what to buy. In fact, these lists that I write often don’t seem to serve any purpose at all. Yet write them I do, and must. It is another compulsion.

Take this morning for instance. I brought out my clipboard, paper, and pen as I often do when I plan to sit outside with my dog for a while (she became barky, and we had to come in, but that is beside the point.) I had nothing really in mind for what I wanted to write, but this is what came out:

  1. I have autism.
  2. I miss my mom.
  3. I wish my mom could see her grandchildren as much as she wanted.
  4. I wish my mom’s rental place was in good condition (I talked to her yesterday, so she is on my mind.)
  5. I wish I could get my dog spayed and vaccinated inexpensively (they quoted me one price when I got her, and then when I called to book, it was $150 more than the vet had said.)
  6. I wish my dog’s surgery was over, and she was well (I am afraid, as the last two animals I took to the vet for help, died, and it has become traumatic for me to even think of going there again.)
  7. I wish I had a wood stove for the winter. (I don’t handle the cold as well as I used to, but I also can’t breathe well if natural gas or electric heat is much higher than 60 F, or about 15 Celsius, so I really want wood heat.)
  8. I wish all the renovations on my home were done so I could relax here (I see everything that is wrong, and can’t block out any of it – yet also can’t fix it. It is a huge weight for me.)
  9. I wish my yards were professionally landscaped so I didn’t worry about the neighbours (it does no good to say not to care. I do.)
  10. I wish our back deck was covered and screened so I could use it.
  11. I wish we didn’t have spiders. (they are really bad this year, and I can’t go out without having to duck through webs – plus they have taken over one room in the basement, and that entry for the house.)
  12. I wish I had planted the large cherry tree in the front yard.

… as you can see, there really is no use for this list. It doesn’t help anything. I just have a compulsion to write things out like this (and yes, I write them complete with numbers.)

Not only do I write lists like this frequently, but I will also walk around, counting on my fingers, while thinking things such as this. Other than for my blog post, this is not something I usually share. While I may say it out loud, I never do if there are people nearby.

All of my life I have been writing lists, lists, lists of nothing – and I suppose I will spend much of the rest of my life doing much the same.

 
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Posted by on September 16, 2016 in Experiences of an Autistic

 

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