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Monthly Archives: February 2016

Autism: Confrontations

Confrontation.

You see, the trouble is, I am already so, so hard on myself. And if it is something I am doing wrong… chances are really high that I already know it. It isn’t that I am ignoring, or denying my part in it, but that I am working on that evil. I am working on it really hard, but change, for me, isn’t easy. But if I am confronted… you see, I already think of myself as being so much less than other people. So much more of a failure.

Or if I don’t know – it is still most probable that I am uncomfortably searching for whether what I am doing is wrong. I will learn. I will find out. I can be taught. But please don’t confront me on it. Maybe it helps other people – but my conscience already overwhelms me in telling me that so much of what I do is wrong. I am already worried. And that confrontation… it won’t help me to overcome, but it will cause me to hide, and hate myself.

And it is hard, really hard, for me to even participate. It is really, really hard for me to go out into the world and try. So if then, I find myself getting in trouble for my failed attempts – even if it looks really bad to you… and someone has to say something – it is like punishing a toddler for spilling their milk, which they tried so hard to pour carefully…

Maybe that is where my own feelings of unworthiness began… Autonomy vs. Shame and Doubt. Those childhood years where if children are praised for their attempts to do things for themselves, rather than punished for their mistakes, they will learn that they are capable, and can learn. If not, they spent their lives full of shame and doubt.

me at 7

I am not blaming my parents for this issue. I hardly even remember those early years of my life, and what I do remember doesn’t include being punished for spilling things… but perhaps that lesson didn’t end in those early years.

My hair was very dark as a child. In the first grade, my teacher asked us to stand up according to our hair colour, and when she said, “black,” I stood up. I don’t remember her exact wording, and I am sure it wasn’t cruel – but I do remember the shame of being wrong. I never let go of that shame, and it was college before I willingly gave another answer to a question that the teacher asked… even then, I was terrified of being wrong.

It isn’t just the confrontation itself that hurts, and it doesn’t even have to be said in a cruel way – but I think I am so afraid of getting it wrong, that anytime I am called out on it… well, I never let it go. Those words. That mistake. That failure, suddenly becomes so big in my mind that I relive it – seemingly forever, as there are very few (I don’t remember any) moments such as those that I don’t relive on a regular basis.

In my confusion over getting in trouble for not looking people in the eyes (as well as my tendency to daydream, and not see what I appeared to be looking at) I had a habit for years in my pre-teen/teen years of staring at people. It was so hard to know where to look. I knew I was doing it wrong, but I didn’t know what others were doing that was so different.

It was my grandparents who confronted me on that one – only not directly. Instead, they talked to each other about “people who stare,” while I was in their trailer with them. It didn’t hurt as much that way, but I still hear their voices whenever I am around people, and I still struggle to know where to look. These memories, even when done in the kindest way, remind me of how different I am, and how hard it is for me to fit in.

And then there are the rules of how to behave online (I am still working on what is appropriate out in public!) and I want to follow them. But the more rules there are, and the more details there are to them, the more I struggle I will have in meeting them.

So sometimes… probably frequently… I will get it wrong.

Like that time I copied and pasted someone’s status on Facebook. Lots of times, this is encouraged, and even expected – but that time I got it wrong. He confronted me through a message, and I cried for hours. I didn’t mean to get it wrong, but somehow I did. That was years ago, and I am still afraid every time I post something on Facebook. I don’t get over these things.

And then there was yesterday. I was going through Pinterest, when I saw a post about the rules for using other people’s pictures on our blogs. Apparently I got it wrong again. So I will work on learning. I will work on correcting my mistake. But it takes time for me to learn. In the meantime, I am praying… Please don’t confront me on this. I will get it. Please be patient.

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Autism: At the Coffee Shop

The gift card had been in my wallet for a couple of years. It isn’t that I don’t like going there, I just don’t go there. I think about it. I consider it. I have wanted to at various times. I just didn’t go.

Out of the way. Hard to get in to. Always busy. Expensive. There are lots of reasons not to go, but I had a gift card, and besides… they are tasty!

I know that many other people go daily, even several times a day, and couldn’t imagine holding onto a $15 gift card for two years. But then, that made the treat so much better.

I had an appointment, and appointments always make me anxious. Following the appointment, there were errands to run. Mostly I hate running errands. I don’t like being out in public, plus, just getting there, I am subject to motion sickness.

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So as a treat, my husband suggested we go to the coffee shop. Like I said, we don’t go – either of us. But it was a promotional time, and I did have the gift card. So he pulled into the parking lot, which was so busy, there was nowhere to park. He drove out onto the street, hoping the meter reader wouldn’t come by while we were in. Busy.

Since we hardly ever go, I really didn’t know what I would order. Mostly it was about prices and sizes. I don’t drink coffee – it hurts my stomach. For some reason, though, I can usually handle cappuccino. However, that is much more expensive, and has a lot of sugar. Hot chocolate was also a possibility. But when I tried to look at their menu, there was a glare on the screen, and I couldn’t read them.

I didn’t know what to do. The cashier seemed to expect us to know what we were getting right away – most people do, I guess. But no matter how long I looked at it, I couldn’t read the screen. Not until my husband suggested that I get out of line (he would wait) and I could look. It was still hard, and he was already trying to pay – wait, you can’t pay. I haven’t ordered yet! He does that sometimes. It strongly increases my anxiety – and I don’t understand it anyway. It isn’t like he had his own cards, or that we don’t pay from a joint account.

Anyway, I found out what I wanted, ordered, and paid for it at the same time as my husband. As I started to calm down, and anticipate my cappuccino (with extra whip cream – I mean, we really don’t get there, and it was a gift card. Why not?) a loud beeping started in the kitchen. Loud! I don’t understand why everyone else just went on with what they were doing, as I ducked, and covered my ears.

It isn’t like I wanted to stand out, but it was so loud! How could I respond any other way? The beeps hurt, and the only way to endure was to cover my ears like a small child.

We sat at a table in the corner, where I took off the lid to allow my drink to cool. Beside me the men were talking. I wasn’t trying to listen, and really, I have no idea what they were talking about, so it couldn’t really be eavesdropping – but I do know that every couple of words was a swear word, and I cringed. I couldn’t help it. I know they weren’t swearing at me, but the words…

My son says that I am too sensitive, and that everyone talks like that. Thankfully, he has never sworn at, or around me – but he does laugh at my reactions when he is playing his games around me.

But for me, the words hurt. They don’t have to be directed at me. They don’t even have to be said in anger. It is just that… I am so visual. Every time the word is said, a picture comes into my mind, and it is not pleasant. In fact, it is very offensive. And while I am not upset at the people for having their conversation that had nothing to do with me, it does hurt, and so I cringe, and I know they noticed. Again, what can I do?

Well, my husband had finished his drink, and some parking spots opened up in the lot, so went to move the van (since I was worried.) And then I drank. And it was really good.

 

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Autism: Scapegoat

As a child, I was often blamed for things that I didn’t do. Something would happen. Something might get broken. Someone might have been hurt. Someone might have lied, or done something that they weren’t supposed to, and I would be blamed.

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I never understood where that came from. I could barely talk, and lies were not commonly something that came from my mouth. Yet I was often accused, and stood condemned before the one in judgment over me. I could neither defend, nor protect myself.

It wasn’t that I was always innocent. A relative encouraged me in stealing when I was very young, and while he was able to outgrow it, I struggled with the abstract thought that things in stores actually belonged to someone, and that it was wrong to take it. This took me years to overcome – however, I would never steal from an actual person. That I knew was wrong.

My younger brother, due to his disability and the medications he took for it, was a very aggressive child and teen. He terrified me, and as a result, I usually met with him in defense mode. Often our interactions would end up in fights, and some of them were my fault.

My older brother (J.) and I didn’t fight often, and when we did, it was often over the younger one (M.) There was that time, and I remember thinking at the time that it always happened that way. J. was babysitting, and was in the basement. I was on the main level, and was walking down the hallway towards the living room. M. was standing at the end of the hallway (around the corner, so I didn’t see him.)

When I came close to him, he screamed – yet I hadn’t touched him. J. came running up the stairs, blamed me for attacking M., and threw me into the table in anger. I tried to say I hadn’t done anything, but I wasn’t believed. I was rarely believed – though, as I have mentioned, lying was not my struggle. What could I do? I ran away. Again.

Then there was the friend I had in the later parts of grade school, and the first year of high school. She got into things such as smoking, drugs, and sex. Her parents determined that I was a bad influence on her (though aside from being molested during that time by my father, which no one knew about, I did none of those things.) They moved her to a new school, and didn’t want me around.

There was the time I was blamed for stealing the encyclopedia in Grade 8 – where the entire school blamed me. I admit, I did have trouble with stealing during those years, but from stores – not from libraries or people. I guess that made no difference to them, and I can understand that, but when they found I hadn’t done it, there was no apology made. An apology in that moment, I believe, would have had a very positive impact on my young self.

And then there was that time in the later part of Grade 11. I had a traumatic event happen to me, which set off a severe case of PTSD. It started with me smoking, which I had been completely against until the night before I started (when I dreamed of smoking, and began craving it.) I had only been smoking for a week, when a friend brought me along to her cottage with her.

She had been a smoker for years, but her parents didn’t know. We would walk down the street, away from view, to have a smoke. Then we would wait a while (to get the smell off of us) before returning. And then her parents went to play golf. She decided it was safe to smoke on her deck, which was where her father found us. She was terrified, so I said she could tell him I made her do it (though I didn’t.) Her parents refused to let us be friends after that.

And here we come to my children. I have written my part in the reasons that the child were taken, and according to the ministry, all was my fault. However, I was neither alone in this, nor were my methods secret from those close to us. Above that, there were things that happened in foster care, and in respite homes, that were both against the rules of the ministry – and I felt were worse than the moments of discipline with my children.

I don’t believe that the children were being abused in these cases, but I also do not believe it was fair to say that all was my fault. I took the blame. There was no reason to bring others in on it – but here, I am the one terrified of the judgment of others, yet being no worse than the rest of them. It isn’t right.

Scapegoat. Someone has to be blamed, it might as well go to the one who cannot defend herself… and besides, “it is always the silent ones,” isn’t it? But I am not so different in guilt than the rest of them, and it seems so wrong to lay all of this at my feet. Is it any wonder I fear the judgment of people?

 

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Autism: Amusement Parks

Funnel cakes and fresh air. Music and laughing crowds. People everywhere. Busy. Loud. Eventful. Two hours of driving, there and back, and nearly an entire day on my feet in between.

Long wait times. Heights. Racing heart. Too many people. Close lineups. Screaming children. Eating away from home…

So many things to turn me away, and yet… this is one of my favourite places to be.

The weather gets hot. The crowds get thick. My family gets tired, but I am wide awake and energized. All of these things that drain me, so where does the energy come from?

A day of laughter. A summer of joy. And then it is over, and I miss it. More than anything… well, okay. I miss my mom. I miss my children. But longing for this place, these days, fills my heart. And it is hard to return. I don’t live there anymore. The cost. The drive. The traffic. All of these things keep me away. But I long to return.

Amusement Park

It fills my heart, and it fills my dreams. For one with such strong sensory issues, and such a strong susceptibility to motion sickness, it makes no sense, but it is true just the same.

And with all my heart, I long to return to those days. To that place.

 

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Autism: Learning to Sail

The first summer, I was so afraid, I screamed. I screamed, and screamed, until they took me in the power boat instead, while all the other teens were sailing. I just couldn’t do it. The water was cold, and what if I fell in? But I was twelve, and the youngest (and smallest) of the group. They accepted it, and we moved on. Then again, I was in Sea Cadets, and the idea of being afraid to sail…

The next summer, I was enrolled in a three week Basic Sail course. It was located at the Royal Military College along the Lawrence River in Kingston, Ontario. The same place. The same small sailboats – Echoes they were called. Our first exercise was learning how to capsize, and what to do after. The day was warm enough, and so was the water, so I didn’t mind. In fact, capsizing on purpose was kind of fun. It was the unexpected that was scary.

I quickly got pretty good at capsizing, and was proud of how fast I could get the boat upright again after. We spent our days learning knots, and learning about the points of sail. Even this was well understood. I could pass the tests. I could tie the knots. It was time to sail.

And then we went out on the river. Two of us to a boat. Theoretically, I knew what I was supposed to do. Yet while sitting there, at the back of the boat, with my hand on the tiller, I just couldn’t seem to get it.

“Go right,” my boat mate would say, and I tried to remember… right is left, and left is right, but I just couldn’t get it, and the boat would turn left. She would yell at me, and I would hate myself for not getting it. Just tell me which way to turn the tiller, I would think. So, so stupid!

So three weeks of Basic Sail, my second year of Sea Cadets, and I hated sailing. But somehow I managed, even then, to pass my Basic Sail levels 1 and 2.

On the day of the test for level 3, everything that could possibly go wrong went wrong. My fault, I am sure, but here we are. It was a windy day, and we were sailing back and forth before the starting line of the race. We had to keep leaning over the boat to stop from capsizing, and still we took on water. Then our bailing bucket floated away, and we realized that the echo we took out was missing its buoyancy tank plugs.

As we rowed back to shore, in a panic, we forgot the centerboard, which hit the dock and cracked. We never even got over the starting line. Needless to say, I didn’t get my Basic Sail level 3. Horrible, horrible sailing!

While I didn’t like sailing, I still liked cadets, and continued on. My third summer, instead of going to camp, I went along on a trip to England with about 6 or 7 other cadets. We spent a week in London, followed by nearly a week in Portsmouth, then returned to London before flying home.

During our time in Portsmouth, we had an opportunity to sail on the Ocean. It was at the Naval base, full of ships, fairies, and such… busy. The sailboats were pretty much the same, but the environment was quite different, and much to my delight, I found I loved sailing that year.

The trouble for me is not in the activity itself, I think, but in understanding the practical applications. This is made especially hard in busy environments, full of pressure (other people yelling at me,) and fear (cold water.) If then I have to take what I know (right from left) and switch it around in a moments notice, the activity is no longer enjoyable for me, and causes much panic and self loathing.

It isn’t that I can’t learn these things, but the practical always takes so much longer (and a calm instructor) for me to learn. So while for nearly three years people had pretty much given up on my ability to either learn or enjoy this skill – along with so many others in the following years – their judgment was not correct. I only needed the right environment to thrive.

 

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Autism: Back to Routine

Finally after many weeks (many months, really, as the medication caused such strong issues even while I was on it) I am starting to feel more like myself. Of course, it has only been a few days, but it is nice to have a routine again. It is wonderful to be up off the couch, and actually doing things again.

In the mornings, I have begun doing yoga. I have to find some way to lose the thirty pounds I gained while on Mirtazapine. Weight is harder to lose than it is to gain, however, so I am trying to alter my diet as well. The thing is, though, that on my own, I have never had trouble with weight. It is only when I am on medication that I gain like this.

Changing my diet has not proven to be easy, however. Food has always been an issue for me. Not that I need the unhealthy foods, I do crave vegetables most of the time, but the fact that so many (even healthy) foods leave me feeling nauseous. This includes water, unfortunately, and no matter how hard I try to make myself drink it, I just can’t.

And then there is the hunger. I don’t do well with hunger, and in that state, cannot think of anything else. So the longest I have been able to hold out on a diet in the last few years has been maybe 5 hours. I will maybe have a fruit smoothie with unsweetened almond milk for breakfast. Then I will try some sort of low calorie drink (this week it has been hot unsweetened lemon water,) with a salad for lunch.

For the salad dressing, I use a little bit of olive oil, mixed with black pepper and tumeric. I even add a few cashews or sunflower seeds to the vegetables to help hold off the hunger. While I am eating, it feels really good, but it doesn’t work. Lunch finishes, and I remain hungry, and I fight it for an hour or so. Then I have to have something to help me feel full. This is where the diet fails.

But it isn’t like I am eating unhealthy the rest of the time. I just can’t seem to lose the weight that was put on by the medication. It is as if it has changed my metabolism, or something. Anyway, though my food issues don’t seem to help with weight loss, the yoga feels good!

Along with yoga, I have finally returned to studying Spanish, reading my Bible, and practicing my keyboard. Pretty good, I think, since not long ago all I could do was lie on the couch watching Netflix all day. I couldn’t even think long enough to enjoy reading or researching (two of my favourite activities.) Now I am even working on learning a new song – where my keyboarding practice for the last six years or so involved playing the same five songs over and over.

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Still, I continue to suffer with shocks every day, and the pressure in my head never seems to go away. I am down to 2.5mg each day of my last medication, and it helps to take that amount daily, rather than the 5mg every second day as I had been advised. My energy continues to be low, and my nausea continues to be high – but at least they are not what they were.

I can sit this way. I can stand this way. I can think this way. I know that it may not seem like a lot of activity for one day – especially since I often complete the yoga, Spanish, and Bible reading in an hour. But for me, for now, it is a lot, and I am thankful for it.

 

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Autism: Different Humour

As we walk along, he speaks to me in German. “I don’t know what you are saying,” I respond in exasperation. “That is the point,” he tells me, and laughs. It is a great joke to him that he is able to speak in another language. I catch some words that are close enough to English to make out, and others that he has used several times, but mostly I don’t know what he is saying to me, and he continues to talk almost non stop.

If only I could get that in English – but he has always liked codes. Perhaps that is what would make him a good programmer. He learns the languages quickly when he wants to – American Sign, German, Java, and so many others. He has always been good with languages.

It isn’t just me, however. He also talks to the cats and dog in German. It is a good way to learn, I suppose, as we are pretty much the only ones he talks to anyway. Though I pretend to be frustrated, I am really amazed at how well he is doing. I started learning Spanish at the same time he started German, and I had taken several courses in the language in the past – but though I can read it a bit, I find it very difficult still to speak it.

This is his humour. Different than most, but still developed in his own way. I like how it makes him laugh.

He is busier on his computer these days (now that he is an adult, and I cannot set limits to how long he spends on it.) However, in the past, many of his jokes were shared with me: I would come home from work to find he had hacked into my computer and blacklisted all of my favourite sites, or he would be playing a virtual game (Second Life, or Minecraft, or something) and create invisible teleports that would send unsuspecting people to other worlds – or cause their head to fly off (Lego) – or have them fly up into the sky as if they had stood on a geyser that erupted.

One of his favourite interactions with me, which he has been doing since he was a preschooler, is to sneak up on me to see if he can make me scream (as he just did before I wrote this sentence.) I jump and scream (I am easily startled that way,) and he walks away laughing, as if his job is done.

And then there are the cupboard doors. I commented to him yesterday that if he were a ghost, he would haunt me this way. I walk into the kitchen only to find that every cupboard door, every drawer, and even the dishwasher are open. He knows this makes me cringe, and finds it hilarious – or at least a good way to get back at him for ‘annoying’ him.

Every once in a while, I am able to get him back. Perhaps I finally catch him unexpectedly when I jump around a corner, and he jumps and yells… of course, then he chases me around the house, and my heart races so hard I think I am going to have a heart attack (but I think it is worth it… maybe.) Or, after he has cleared the sink (dishes are his job) I will put one dish into the sink, which he will clear, and then I will put another… this usually only happens when he fills the dishwasher while I am feeding the dog, or having lunch, though. He is much better at this game than I am.

While both of us struggle with typical humour, that does not mean that we have no sense of humour. It just looks different from other people, and perhaps isn’t seen so often when we are in groups (I mean, there is so much to filter out in those environments, how can we be expected to get the joke then, too?)

 

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