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Category Archives: Autism: Out in Public

Autism: Too Much Effort

I meant to go swimming almost weekly this year. I wanted to do the same last year. My therapist (who is no longer working with me – something about being short term only…) said she could get a free weekly pass to the community centre both last year (but I had no transportation) and this year (but she hasn’t talked to me since she offered.)

I wanted the free pass, but I didn’t get it. I could go for the Toonie swim, and did for three weeks straight in September/October, but I would be more likely to go with the pass.

Swimming is a good activity for me.

Though I am allergic to the chlorine and get rashes, and though I prefer to swim alone (I wouldn’t say the pool was crowded when I went, but there were people I had to swim around, and children who jumped in and splashed into my ears causing earaches) being in the water is calming enough that I am able to get through those things.

When I go swimming I:

  • get out of the house
  • do exercise
  • quickly become calm
  • feel good after
  • am happy
  • often sleep well after

All things my therapist told me I should be doing when she was talking with me.

But there are a lot of barriers to this activity for me.

First of all, I have to contact the Handy Dart bus service three days in advance to book my ride. I don’t know three days in advance if I am going to be functioning well enough to leave the home, so that makes this type of transportation pretty unpractical for me. I understand why they need that notice, but… it would be better if I lived on the bus route so I could take the ‘normal’ bus, or if I lived close enough to walk (as I did when I first moved to this town 17 years ago.)

It also means that I have to leave home. Even when I have access to a vehicle that I could use whenever I want, I struggle so much to leave the house most days that it really isn’t worth the insurance or maintenance costs. It worked when my Mom was here, but not when I am alone (my son likes to leave the house much less than I do.)

Then I have to get changed into my swim suit and get in the water – the thought of which makes me cringe until I actually get in the water.

Afterwards it is awkward to change because I am wet, and I have to take a longish shower to get the chlorine off so I am not itchy for the next few days. Even so I can still smell chlorine (I guess it gets in my nose) for a day or two after.

And then I have to get home again – also which needs to be booked.

Then, too, I didn’t mention that although swimming calms me, the thought of all these steps brings me to panic up until the moment I get in the water.

So I would love to go swimming, but it seems there is just too much standing in the way of me actually following through with the activity – much like many other things in my life. It just takes too much to get there.

cold water

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Autism: Give Me An Out

I woke up with such a bad headache (this has been happening a lot lately) that I didn’t think I should go to church, but it dulled as the morning went on – and really, I would rather go than not, even when I don’t feel like it.

When we get to church, we often say “hello” to a few people, get our sermon notes, and go to our seats. While my husband might stop to visit, that part of the church at that time very quickly puts me in sensory overload.

  • The fan running above me.
  • The doors opening and closing.
  • People all around me.
  • Open spaces.
  • Lots of voices.
  • Children running around.
  • Sights, smells, sounds… it is all just too much.

And when I have to stand in there – which is true of any such space (I hate being in warehouse stores for these reasons even more) – I quickly start going into meltdown mode.

Mostly my husband recognizes this and gives me an ‘out.’ He might stay, but I am able to comfortably excuse myself and go.

Perhaps on this occasion it slipped his mind how hard this was for me. Maybe he thought he would only talk for a moment, and it would be okay. Possibly it was because on this Sunday there were fewer people in the foyer when we got there.

Easter 2015

Whatever his reason, I found myself ‘trapped’ there in that foyer with no polite way I could find to excuse myself. We stopped to say “hello” to one couple, and he ended up staying to tell a long story about how his jaw was broken. To include me, I suppose, they kept looking at me while he told the story, and I couldn’t get away.

It wasn’t about his story, or about the couple we were talking to (or he was, anyway.) In that type of situation I am being bombarded by all sorts of sensory stimuli, and I can’t block it out. It was all I could do to try and hide how irritated I was getting.

Finally the story was over, and we started to walk away. I thought I might be okay, though I was still struggling. We only took a few steps, however, before he stopped to talk to someone we didn’t know.

She had just moved to town a few months ago, and was new to the church. My husband was trying to make her feel welcome. I know we are supposed to do that, and I saw the value in it as he was speaking, but… I was already doing pretty bad, and wasn’t able to handle any more.

I know that I didn’t do as good a job of hiding my irritation – and again, it wasn’t about what my husband was saying, or about the person he was talking to. I was feeling trapped and overwhelmed, and could find no polite way to escape.

So the irritation, I am sure, showed loud and clear. I was crossing my arms and hugging myself as I do when I feel that way. I was looking away, trying to block things out, shifting from one foot to another… I am sure it didn’t help her to feel welcome, but it certainly wasn’t my intention to come across that way.

Really, it was all I could do not to go into full meltdown, crying and running away, right then and there. Of course, she wouldn’t have known that. She wouldn’t have ‘known me from Adam,’ as they say (or should it be Eve???) and certainly wasn’t aware that I am Autistic. It isn’t like I have a neon sign on my forehead announcing that.

So instead of seeing that I was in sensory overload, and needed to get out of there, I am pretty sure that in her eyes, I just seemed rude.

Finally that conversation was over, and we went in to our seats – but I was crashing hard! My husband tried to talk to me about other things. He tried to hand me my sermon notes to read over. He tried. But I couldn’t. I was done. Like I said, it was all I could do not to cry and run away, and I was having such a hard time… I guess ‘regulating’ myself might be the right term.

Then the worship music came began, and the calm washed over me, and I was okay.

But I wish they understood how hard such things are for me and would always give me that ‘out’ I so need in these situations.

 

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Autism: Uncontrollable Laughter

We were sitting at a friend’s house for Life Group (Bible study) and were going around talking about how our week had been. Typically I really struggle with this – partly because I don’t speak well in groups to begin with, but also because I have been taught not to think of what I am going to say while listening to someone else talk.

That is a really hard rule for me. It isn’t because I am a bad listener. If I knew I wouldn’t have to say anything for a while after, or if silence were acceptable between speakers to give me time to think, I would be able to listen quite well, but… as long as I know my turn is coming and I will be expected to speak, too, I go into panic and my mind shuts down.

When it comes time for me to talk, my mind is blank, and I pretty much can’t remember anything that happened in the week, or think of anything to say.

“How was your week?” someone asks me.

“I don’t remember,” I respond – and they all laugh. But in that moment, that is the truth. It isn’t that I am generally unable to remember what happened in a week, but in that situation, I really can’t think at all.

That night, however, was a good night for me. I was functioning pretty well, and answered several questions. I talked a LOT about my dogs. We had just been given “Grace” six days before, so I had lots to say.

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We were talking about the importance of community, and how that is hard for some of us. My husband had mentioned that when he is home, he is tired, and just wants to read or go on the computer. I said that if I wasn’t pushed to go out and visit (Life Group, Church, etc.) that I would spend just about all of my time with my dogs – because I like dogs more than people.

They all laughed at me. I went on to say that I know I am not supposed to say things like that, but it is true. Dogs are easier than people. Thankfully they know me. They have known me for a long time. While still laughing, they told me that they have known this about me for a long time, and it is okay (they love me anyway.) It is nice to be accepted.

The thing that really defined the evening for me though was when my husband was talking about one of his brothers who had been in the hospital for a while. He couldn’t think of the word, and came up with that his brother had been ‘ejected’ from the hospital.

Well… that was it for me for the rest of the night!

I am a very visual person, and suddenly I have this visual in my mind of people being flung off the top of the hospital. Cannons, sling-shots, catapults… it didn’t matter how it was done, all these poor people were now flying through the air as I tried vainly to get parachutes on them all before they started coming down.

It has been a long time since I laughed so hard in public – not just because my sense of humour is different from other people’s, but also because I feel very self conscious about laughing like that in public. I worry about how ridiculous I look – and I did in that moment, too, but I just couldn’t stop.

Everyone else went on to talk about other (serious) things, and there I was with tears running down my face because I was laughing so hard. All those poor, poor people flying through the air. Thankfully I never saw any of them come back down.

“And that is how we keep healthcare in Canada free,” I said.

 

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Autism: Unexpected

I wish I had brought my camera, just… it was so unexpected! The whole thing, really. I am not even sure having my camera would have worked, however, as I didn’t even think of it until long after. Plus… they wouldn’t have liked it.

First off, my son doesn’t like the cold. Unlike me, he likes dark and rainy days, where he doesn’t have to go outside. If he didn’t have to shovel, I think he might even like the winter. But his circulation is bad, and he gets cold fast. So he doesn’t like the snow.

When the weather called for snow last week, therefore, he announced that we wouldn’t be going for our walks again until spring. That made me sad as it seems we just started again after the heat of the summer (which is even harder on him than the cold.)

It was then surprising when he asked me if I wanted to go for a walk this morning (of course I did!) We got all bundled up, and out we went. The thermometer said it was -7 Celsius when we left the house.

The nature trail is about a 5 minute walk down the street from me, if that. We cross the train tracks and go through a gate, and the trail leads along the lake-shore into town. It is such a nice walk that we hardly ever choose to go in another direction.

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As we were walking and talking on the path through the snow, I was reminded of similar walks with my older brother when we were young.

“Was it next to the train tracks?” my son asked.

“No.”

“Was it by the water?” he questioned.

“No.”

“But it is the trees, and the snow, and the leaves,” I said. “Like the forest beside my grandparent’s house that we later bought. It feels the same,” I explained.

As we walked I suddenly saw a deer on the lake side of the trail, hopping.

“Did you see it hopping,” I asked my son, hopping up and down.

“Shhh!” he said, “You’ll scare it.”

“Right.” I usually remember that, but I was so excited. We have seen deer around often, but never on the trail. We quietly kept walking, and very quickly saw another deer up on the tracks on the other side.

It stopped and looked at us, and we stopped and looked at the deer. I silently prayed that it would know we weren’t going to hurt it as we continued on our way. It watched us pass, and whenever I looked back, it was still there. The other deer had run ahead, and was up on the tracks in front of us. I prayed that a train wouldn’t come before they had a chance to carry on (and the next two trains to come were running very slow, so all was well.)

Further up my Pastor met us, running in the other direction. He said ‘hello’ to me, or… I think he asked how I was doing or something. I responded, and realized he likely didn’t recognize my son – the last time my son was in church he looked very different. Afraid my Pastor would think I was with some strange man I quickly said, “It’s (my son.)” So that was okay.

As usual, we walked to the bridge (about 1/4 way along the trail) and then went back, passing my Pastor again along the way. That was a great walk!

My son was cold and tired as we headed back home. He once again told me he wouldn’t be walking again through the winter.

“But if we hadn’t gone, we wouldn’t have seen the deer,” I told him.

“But now we have seen the deer, so we don’t have to go back,” he replied.

Oh well, it was a good walk anyway.

 

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Autism: Dressing Appropriately

It wasn’t exactly a cold day, but I had been getting sick. I had washed my hair, and since blow drying causes my scalp to itch intensely for a long time after and I therefore avoid it most of the time, my hair was quite wet when we went out that night.

chilled

Already feeling chilled, and knowing our seats were near the ice of the hockey arena (my husband is given free tickets when his friend and coworker, who holds season tickets to the home games, can’t go) I decided to put on a toque and gloves, and was glad that I did.

My husband also wore his toque, as he almost always has on some type of hat when we go out.

So there we were at the arena dressed in a way that made sense to us. In between periods we get up and walk around the arena – it is good for exercise, and a good way to spend the time.

On one of our rounds, however, a man stopped us. We didn’t know these people at all, wouldn’t recognize them to see them again, and I can’t see how what we were wearing had any effect on him – but he stopped us and seemed sincerely upset that we were wearing toques on that night.

He turned to his wife and asked her if it was cold enough for the way we were dressed. She said no, but that she thought our toques were ‘cute.’

He shook his head and mumbled as they walked away and I thought, “what does it matter to him how we decided to dress?”

It isn’t like we were naked, or wearing the other team’s jersey, or walking into a sauna dressed for winter – yet he was quite upset and I don’t get it. If he could get so upset over something that didn’t effect him in the least, how would he respond to something that was actually important?

It is true that I don’t often have any clue what other people are wearing. Even when I try really hard I can hardly ever keep in mind what people have on from the moment I turn away – I just don’t see it. That has always made it near impossible for me to dress in a way that I ‘fit in,’ and by the beginning of high school I had even given up trying.

I am, however, very sensitive to the weather. Hot, cold, wet, windy… I feel all of these to the point where if I am not dressed appropriately for the weather, I am completely fixated on that discomfort (read: pain!) For that reason I am very conscious that what I choose to wear is comfortable for the situation.

While I was in the arena – chilled, near the ice, getting sick, and with wet hair to boot – I was thankful that I had decided to wear my toque. It was only after this… interaction, that I became aware that we were the only two people in the arena dressed so warmly. Still I don’t understand why that mattered to much to him.

By the time the game was over (‘our team’ won 7:4) the weather had turned. The wind was blowing hard, filled with rain that even looked like snow up above us, and it was cold! So cold that my teeth were chattering by the time we got to our car – and this man still had me questioning my decision to wear a toque to the game.

Ridiculous.

 

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Autism: Nice While It Lasted

For a few weeks I went swimming.

When I was young I lived in a large city, and swim passes were cheap – something like $25/month and there were a lot of public swims. I think that even then the pass was for all of the community centres, so if one was closed, we could go to another. I think.

In the small town I live in now, there is only one pool, and it is something like $6.50 per swim. But we do have what is called a ‘Toonie swim’ which right now is available four times a week. For $2 (the Canadian $2 coin is called a ‘Toonie’) we are able to access the pool and hot tub for an hour. It isn’t a great deal, but it is good enough.

All of last year I wanted to go, but didn’t have a vehicle to access the swims during the day, and was just too tired to go in the evening. Besides, I don’t like driving at night – and while I prefer to do most things alone, I don’t like to go places alone; the thought overwhelms me with anxiety and I back out.

Anyway, this fall all of the ‘Toonie’ swims are during the day, but for a couple of months I had access to a vehicle. On top of that, the Thursday before my birthday this year, my husband had an unexpected day off of work (they had to close to get the electrical system switched or something like that) so I asked him to go with me.

My husband is often tired, and when he isn’t working, volunteering, or going to watch a hockey game, he pretty much likes to stay home – so I was surprised and pleased when he agreed to go with me.

I was anxious. I am always anxious. That is me. But we got to the pool, he paid, and in we went. I already had my swimsuit on under my clothes, so I was one of the first people in the pool.

The moment – the very moment I got in the water a feeling of calm and contentment washed over me. Even in spite of the many people who did end up coming to the pool at the same time, I felt calm.

So the next week, though I was alone (and very close to a panic attack) I went back to the pool, and it was the same.

For a person whose mind is always going, always concerned with things of the past and of the future, I was amazed at how present I was. Just me in the water swimming, with very few thoughts of anything else (even of the people I had to swim around as I did my laps.)

The next week was the same – panic turning to instant calm that lasted for the hour I was in the water.

And then…

That is about how long my good habits last. Timing, illness (I got a cold two days after I went swimming the last time) business – even though I don’t work, and technically most of my time is ‘free’ I still often feel overwhelmed by how much I do have to do… and the routine is broken.

I haven’t gone back, and after this week I won’t have access to a vehicle to go. I can get a bus, but that means I need to know at least three days in advance that I will be up to going in that moment. I don’t believe a second vehicle is a good use of money for our family as it is very rare I am up to leaving the house anyway, but…

Who am I kidding? Three weeks. Three weeks and even a good habit that brought me so much peace was broken – even though I did have the van for a few weeks after. But it was nice while it lasted.

Summer 2015 011

 

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Autism: To Dream Again

This morning was “The Summit” church service at the wharf – were once a year all three campuses and five services of our church get together for church, worship, and lunch after.

It rained a lot yesterday – which is kind of a big deal since we had a drought all summer with only half an hour of rain in about 2.5 months. Today was sunny and the skies were clear (which also hasn’t happened for much of the summer.) It was a nice day for outdoor church.

While I was there I once again noted something that surprised me. I was watching the parents with young children, and the older children at the awkward stage, and was surprised once more to acknowledge that I don’t want children.

Stressful, exhausting, difficult…

It is a foreign concept to me to not want children. Until a little over a year ago, even after years of infertility and a traumatic failed adoption, having children of my own was the main desire of my heart – even though I did have, and raise, and still have, my now adult son.

I would see other parents with their children and felt… envy, and sadness, and… lost, alone, forgotten. Other people had families – why couldn’t I?

It was another, and a major, characteristic that separated me from them – and I hated that separation. I still hate it, maybe, but at least I can see what I couldn’t see then: Children are overwhelming.

Beautiful, and fun, and worth the effort? Yes – but…

Children call attention to their parents. Always. You see the children, you see the parents – and there is advice, and there is judgement, and there is a lot of stress that comes with the job.

And I can’t be watched.

As I sat watching the parents dealing with the children I remembered that. I can’t be watched, and children call attention to their parents. Always.

I can’t be watched, for when I am watched I operate from a different part of my brain which significantly drops my functioning level to the point where I pretty much always fail. So having children – no matter how much I wanted them and loved them (and I did) – was a recipe for failure. There was no way beyond it for I can’t function when I am watched, and parents are always being watched.

As I began to accept this revelation – which has come to me in the past, but I always fought against (“if I could only try harder, or do things different, or research more, or… maybe I could” – but no, I can’t function when I am watched, and whatever else a parent faces in raising a child, they are always watched – and if they don’t want to be watched, there must be something really wrong with them, and they shouldn’t be trusted with their children to begin with; right?)

As I began to accept this revelation I began to realize that if it weren’t for the memory of the trauma of losing ‘my’ children, and without the fixation of a lifetime of wanting children (possibly because that, in my eyes, was the measure of success and ‘normalcy’ – to be a ‘good parent’) I might even be able to admit that I am happier and calmer with my life as it is now.

The traumas are there, and they do cause me to struggle a lot of the time – but this thought that I could live okay without children… it is mind blowing. It is to turn completely in the other direction, and accept that it might be possible to dream again.

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