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Category Archives: Autism: Reality, Sensory Issues, and Other Abstract Concepts

Autism: A Better Mistake

It had been several years since I had been to the eye doctor. Even then, the last time I went I got contacts, and wasn’t given my new prescription for glasses. I was due for a new prescription, yet I am on a disability pension (federal, not provincial, which doesn’t have any benefits, and pays much less at that) and have no coverage, so couldn’t bring myself to go.

The last time I went, it was $150 just to see the eye doctor, and that didn’t include the cost of glasses. I can’t afford that.

So I have been putting it off, and putting it off, and meanwhile I have been getting more and more disoriented as I go out. My prescription wasn’t working for me anymore, and I had to do something.

That is when my friend told me about the vision clinic in the mall – there I could either buy glasses from them, and get the prescription free, or buy the prescription from them for $45, and get my glasses somewhere else.

I fully intended, when I went in to that appointment, on either buying the glasses there (ready in a hour – very convenient) or buying the prescription, and getting my glasses at the online store I have been using for years. Fully intended as in those were the only two options I had in my head going in – and I don’t change my thoughts quickly, especially when I am in a situation (such as going to an appointment and talking to some strange person) that causes me anxiety.

It happened just before Christmas, and my husband drove me down to the appointment. At least I didn’t have to deal with that!

She took me in right away, and said she had forgotten the appointment, and had put on some Eucalyptus essential oils or something – and asked if it bothered me. Not at all. I have sensory issues, but I actually like most scented products like that. If she smelled like smoke… or even unscented products (those are some of the worst for me) it would have been a problem, but not the eucalyptus.

Then she started with the vision test.

I might have been in there 5 minutes total, but…

The way vision tests are done is very hard for me. I can’t remember in between the lenses which one is better, and anyway, they pretty much all looked blurry.

I tried. I tried really hard. I even told her I was struggling, and that they all seemed blurry.

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We got to the end of the test, and she showed me the old and new prescriptions. They were both blurry, and I told her that – so she got frustrated and said it was the best she could do, and I should go to a proper eye doctor if I wanted something better. I couldn’t explain my struggle.

She had the prescription on the screen – both the old and the new. I was looking at it as I wondered how to solve the issue – could she try again? I couldn’t afford to go to a proper eye doctor. I stared at the screen as I tried to process this complication – but she sent me out without any options.

When I got home, I decided to order glasses with the new prescription anyway. I felt bad for not paying for that prescription, but she had said that I only had to pay for it if she printed it out for me – she didn’t even give me that option.

My old prescription was still in the system online, and my astigmatism hadn’t changes (she said that while I was in the appointment.) So I put in the new numbers, and ordered the glasses.

Meanwhile all the numbers I had seen were running through my head, and I realized I made a mistake – I put in both numbers for my left eye (old and new) and not the correct one for my right eye. I emailed them right away, and tried to have it corrected – but it was Christmas, and no one got that email.

Just before New Years I got the email saying my new glasses had been shipped – ‘great,’ I wrote back, ‘only I emailed saying I had the wrong prescription and asked to have that changed.’ They got that email, and said it wasn’t a problem, they would make my glasses in the proper prescription and I could send the ‘wrong’ ones back.

And then they came in…

I was just going to send them back unopened, but I wanted to see how bad they felt to wear – this prescription was -0.50 stronger than I was supposed to have for my right eye. I put them on and…

It was the best I have been able to see in years!!!

They were perfect. Comfortable. Didn’t make me dizzy at all. In fact, it was the first time since I started wearing glasses that I didn’t want to take them off. So wonderful!

I wrote again to say I wanted to keep this mistake. It was too late to cancel the proper ones, but they did give me a large discount. Since it was my mistake (and a very happy one at that) my husband and I agreed that I should pay for them.

The ‘proper’ prescription is good for using at my computer, which is pretty close to me. For everything else, I use the mistake glasses.

A better mistake I have never made.

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Autism: Me Trying to Live Better

I don’t tend to do New Years resolutions. For one thing, January doesn’t feel like the start of anything for me. From the time I was very young I have considered a year to go from September through August – and when I say something happened ‘last year’ that is often the time frame I am going by.

For another thing, I don’t tend to stick to things long enough to say, “this year I am going to…” and mean it. I get burnt out too fast. I get overwhelmed too fast. I quickly fail. Again and again I fail. I really don’t need anything more to be considered failures for me as I carry them all around with me, and they weigh me down, and make it harder and harder to do anything well (or even have the energy to try.)

So I don’t make New Year’s resolutions, and this year is no exception.

Only I have been thinking about this a lot.

I am a compulsive person. I need routine. I need to know what is expected of me – even if I am the one putting those expectations on myself. I don’t do well with open ended suggestions, or time frames, or flexible commitments (what does that even mean?!)

Because of this I tend to push myself way beyond what is good for me (though I do realize it isn’t much in terms of what other people do) and I… make a mess of things. I push myself, and push myself to keep these commitments – and while I am keeping them, I am failing.

Take this blog, for instance (and for instance here means this is what I am talking about.)

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In the beginning I was writing six days a week. My decision – not based on what anyone else asked for – yet a commitment just the same. I pushed myself to burn out, and finally decided to go down to three days a week.

That was more manageable (after all, most of my posts take less than 20 minutes to write – and it isn’t like I am doing much else) and yet I was still burning out. I have been writing now for 2.5 years, and for the last 7 or 8 months I have been pushing, panicking, overwhelmed trying to schedule three posts for every week.

And why???

I keep asking myself that. It isn’t like someone else told me I had to write three posts a week. It isn’t like missing some here and there would have been the end of the world. But I am compulsive, and I couldn’t not write.

Yet I have been painfully aware that because I am pushing beyond what I can handle, I have noticed that my posts (at times) have been suffering. It isn’t even so much that there is a badly written post here and there – that could happen, and I know it does, but… It is that when I am overwhelmed – whenever I am overwhelmed, I tend to become negative and start venting.

Venting.

It isn’t a good thing.

The purpose I had for writing this blog was to say “Finally I have been diagnosed – now what?” I expected things to get better. I expected maybe that others would understand my struggles more, and that I would understand my struggles more, and that because of that, things would get better.

But I still struggle badly with depression and anxiety – even though I am no longer working. I still struggle with sensory issues, and burnout, and irritation. I still fall into moments of despair.

And I don’t think that it is good for me to be writing so much that I turn this blog into a journal instead. I am trying to remind myself that not everything needs to be shared in order to be honest – I really struggle with over sharing; I have for a long time.

So though it is not like me – and I am not even sure I can function this way – I have decided that it is best to only write my blog when I have something to say. No schedule. No pressure. No venting.

So not like me – yet so what I need, I think.

And this decision, I have to remind myself, is a good thing. This is not failure, this is making the right decisions for me. This is making the right decisions for my family.

This is me trying to live better.

 

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Autism: December 2017 part 1

December of 2017 was a really tough month for me. A month filled with panic, hopelessness, and despair – and I really can’t even say why that was. It was just hard.

It didn’t help that time seems to be speeding up for me, making it even harder (and it has always been hard) to align my perceptions with reality. It also doesn’t help that there is so much pressure around Christmas – gifts and such – whether real or perceived.

And even if people say not to worry about it, worry I will – for excusing myself from what I feel that others expect of me leaves me with an overwhelming sense of guilt. Even if it doesn’t matter much to them I will still carry that guilt with me… forever (at least it seems like that, since I still feel guilty for every time I disappointed anyone, or said ‘no’ to a request, or…)

So it was a hard month. A sad month. A month where most days I could barely move, and it was all I could do not to cry most of the time. It was only a week before Christmas when I was able to gather up the motivation to even decorate – when often I have things up by the beginning of the month (for I do like the lights!)

Christmas Eve was busy. I made a turkey dinner (because it is cheaper than chicken) for my husband and son and dogs and cats – I don’t eat meat – and we went to church for the 2pm service instead of at 10:45am as we usually do (it was a strange Sunday.)

That might seem normal for most people, but it is a lot for me. So overwhelming that I dreaded it for more than a week before – and I was only cooking for my family. It wasn’t like I was cooking for a large group, or even for friends and extended family (that I can’t do, it is just too much pressure.)

It isn’t even like making food for my dogs (I have 3) and cats (we have 2 upstairs – my son feeds his own cat) is unusual. I do it every 3-4 weeks. But it is something I do on days when my son is cooking usually for it is very time consuming. You see, I make a large batch for them, and then freeze the food in silicone baking cups; enough for a month. The meat has to be cut into small pieces, no bones, and the vegetables, broth and such get blended up and divided after. It is quite a bit of work on the day I do it, so I don’t like to do anything else that day.

But I couldn’t help it for Christmas since the turkey was large and for everyone (but me.)

Anyway, I got through it. Once it was done I could relax a bit.

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Autism: Dead or Alive

I woke up coughing at 5:30am. This was not related to the smoke in the house that I mentioned on my last post – though it probably had something to do with it, my house was not smoky on this particular night.

I felt like I was choking, and my first thought (which lasted for several minutes) was that there had been a fire and I died of smoke inhalation. For about 5 minutes, even though I could dimly see my room around me, felt and heard ‘my girls’ beside me, and was aware of one of my cats on the bed as well (I have a very full bed these days!) I completely believed this to be true.

When I told people at my Life Group (Bible Study) about this, one of them asked if I was in Heaven. When I said, “No, I was looking at my clock, and into the faces of my dogs,” she mentioned something about the possibility that I wouldn’t make it there; to heaven, that is…

Panic!

If I dream I have died (though this wasn’t a dream) and don’t find myself in heaven – does that mean I am not saved?

Thankfully my husband responded that he believes there will be animals in heaven, and gave his reasons – so in a few seconds I was calmed by his words (thank you, dear husband!) I need my dogs. I don’t think that will change when I am dead.

So there I was, lying awake in bed, fully convinced that this was the beginning of the afterlife and I would be trapped in this place (at least I had my babies with me!) when I realized I must be alive.

How disorienting that was!

It was then that I felt a deep longing for my youngest (foster) daughter who was taken from me 8 years ago, and remembered that I had been dreaming of her – though the dream escapes me now – when I was awakened by the choking.

Perhaps in those last moments of my dream there was a fire, and I was dying in it.

What a strange experience that was, and I wonder if there are other people in the world who are fully alive, and believe they are dead. So weird.

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Autism: Smoke and Panic

The last couple of logs that I put into the fire in the morning didn’t burn well. While I was making supper, I kept smelling smoke. Finally I figured out that it was from the logs (our fireplace doesn’t tend to smoke, so this was highly unusual.) So I moved the logs around, but the upstairs was still all smoky.

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My husband looked into the fireplace when he got home, but didn’t see anything wrong.

I guess the bigger challenge was that I had only just realized that our wired in smoke alarms weren’t working (I wonder how long ago that started!) We didn’t even have backup battery operated ones that worked, so my anxiety was very high.

After all, I have known a few people whose houses have burnt down. My grandmother was one of them, and though the people were all out of the house at the time, she lost all 5 of her cats in the fire, and burned her hand when she tried to open the door to get them out (she was just arriving home when she saw the fire.)

If my animals died in a fire, it would be a trauma I would not overcome. It would hurt me for the rest of my life. This I know.

Well, the smoke filled the upstairs enough that it aggravated my throat through the night. That, mixed with my panic about the smoke alarms, set me into a panic that made it very difficult to get to sleep.

It was about 1am before I slept, and has been happening for about 2 months now, I woke up at 3:45 am unable to get back to sleep.

Though I am sleeping little, doing little, and functioning very slow, the days are flying by.

I feel detached from the world, and disoriented from the speed – like the roundabouts they used to have in the playgrounds when I was a kid (before they regulated the speed they were able to spin.) I feel like I am watching the world spin and waiting for my opportunity to jump on – but it is too fast, and I get dizzy just watching it.

 

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Autism: Created to Be

When I left, I felt really good. I was decently calm (I never am fully calm when I have anything to do) and even wanted to be out visiting; which is very unusual for me. I talked to people, and smiled, and then…

It wasn’t part of what he had planned to say, but he made a comment about ‘human people,’ which lead him to start talking about ‘dog people.’ You know, like “human people… I don’t know why I said that. What other kind of people are there… unless they are dog people…”

So then he went to mention that they were not people – dogs that is – or your babies, or…

He made it sound like a joke, and lots of people were laughing. Some were even clapping, which doesn’t happen frequently.

Then he said he thought it was a gospel problem, and he could write a whole sermon about it. Then he went back to what he had been talking about before he got distracted.

The whole thing maybe lasted 2-3 minutes – but it caused me struggle for the entire day. Not even a little bit, I was fully triggered into severe anxiety and depression, which were very difficult to overcome.

My babies are my source of joy. A level of joy I have rarely experienced in my life. They are… if not healing my loss (which isn’t likely to happen this side of heaven – the pain and trauma and triggers are all to much) they are at least helping me to go forward.

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They are an answer to my ache for children, for family, even for friends – which people took from me over and over again.

They are my tie to sanity, though I have to let go of some to keep the rest.

They are not people – and I am so thankful for that! But their place in my life as my ‘babies’ is essential for so much of my life it would take all day, and maybe even more, to explain it (and even then most people wouldn’t understand it.)

It was a joke, but still I worry that people are coming to take even this away from me. And why not? They’ve taken pretty much everything else. And it makes me want to hide again, and not go to church, or write, or go out, or be seen, or share myself with anyone ever again – much as I felt when my children were taken.

And it was only my dog, who was given to me for that very reason, who could pull me through that. Then he died, and I was back there again. So I was given Clara, and a few months later Molly, and several months later Misty-Grace. They are my babies…

I went in happy, and left in pain. I am pretty sure he didn’t mean for that to happen – and while it may sound like I am venting about ‘those’ people who don’t understand, this is a man I both like and respect. Perhaps if it weren’t so, it wouldn’t hurt so much.

It is just another thing wrong with me.

I was upset for a long time after until… the sermon series we have been on is titled ‘God Still Speaks.’ And this I believe. I was upset until God reminded me through thoughts that He gave me my dogs, and He gave them to me for this very purpose. He gave me this heart for animals, and it is a gift – not a gospel issue.

This love I have for my babies is a strength, not a weakness, and this is an essential part of who I was created to be.

 

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Autism: Tapestries

When I was a child my Aunt had a wall mural along one wall in her basement. It was framed like a window, and even had a curtain. Since her couch was against this wall, I didn’t spend as much time, maybe, as I would have liked looking at that mural.

I am not sure if she still has that mural on her wall as I moved across the country 17 years ago, and haven’t been in her house since.

When I was a teenager, there was one day when several of us were visiting at a friend’s house. For whatever reason, which I cannot now remember, we were visiting in her sister’s room (her sister wasn’t there, but in my memory I don’t have the impression that we shouldn’t have been in there.)

On one wall of her sister’s room, there was also a mural. Two of my friends were on the bed, which was along the wall with the mural. They were doing a hypnosis game, which we did a lot in those days. Another friend and I were sitting on the couch facing the mural.

As I was sitting there, I suddenly felt myself transported into that picture, which was of a forest, and for many minutes I was imagining that I was walking along one of the trails into the woods. As I was ‘walking along’ I felt a presence to my right, with an awareness that someone was walking along another trail to that side of me.

A few minutes later, the friend on the couch beside me (as I was sharing what I had been imagining) told us that she had, at the same time, been imagining that she was walking along that other trail to my right.

Pictures.

I can get lost in pictures, and in fact frequently do. Perhaps that is why I like Pinterest so much, and spend so much of my time perseverating on that site.

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A few days ago, as I was looking through my… I don’t know what it is called… feed??? Anyway, as I was looking through Pinterest, I came to a picture of Christmas tapestries. Immediately my interest was piqued, and I followed through to the site where they sold these tapestries.

They did have a lot of Christmas ones, and I really liked them – but they also had forests, and beaches, waterfalls, the night sky, cities… so many beautiful pictures. I spent hours looking through them, for even in these tiny representations of the much larger tapestries, I could see that they were realistic enough that in looking at them I could be transported in my mind to other places and experiences.

I think that if I were going to get a tapestry (and I can see what huge benefit this would bring to my life) I wouldn’t just want one. I would get several, and change them depending on my mood or what season it was.

And I would spend hours staring at my wall and imagining I was somewhere else.

How magnificent would that be?

 

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