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Category Archives: Experiences of an Autistic

Autism: Through My Brother’s Mouth

My younger brother is noticeably disabled – meaning that when people see or talk to him, they can tell. Obviously I am not him, and can’t attest to his experience, but it seems to me that people are much more gracious to disabled people who seem disabled.

Not to say I wish I did, only… perhaps I wouldn’t have been so hard on myself throughout my life for not being able to fit in??? I didn’t know I was disabled, and believed people’s labels and assessments of me (which weren’t kind.)

NT’s seem to not like labels – as if they put people in ‘boxes’ and make it harder to live – but I really appreciate my diagnosis. It isn’t like I didn’t know there was something ‘wrong’ with me before, just… I always thought it was my fault. (So did other people.)

Anyway, my younger brother is noticeably disabled.

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He has been on medication for a severe seizure disorder since he was very young (before Kindergarten.) The medication, along with the fact that he doesn’t like to brush his teeth, means that he has a receding gum line, and not so clean teeth. I, on the other hand, tend to obsess about brushing my teeth – and have a real struggle talking to people if I don’t feel my teeth are very clean.

My brother has a tendency to squint, and when he does, he curls his upper lip in towards his gums. It looks strange. I see that now – but I had the same issue and had to work really hard as a young teen to stop doing that (after having it pointed out to me by a few people – who weren’t being kind when they said it.)

When my brother talks, there is a noticeable catch in his words. He stumbles over them, much like tripping when walking. I don’t think I have a catch in my words most of the time – and no one has ever pointed that out to me, but…

My brother has a limited number of ‘special interests,’ which have been the same for years: bus schedules, wrestling, canasta. Since he is extroverted, he talks about these things a lot! To whoever will listen (and since he doesn’t seem aware at all if someone is irritated by his choice of subject, so long as they stay in listening distance, he will talk.)

Since my brother has a traumatic brain injury from a car accident when he was very young, he never was diagnosed Autistic – though even before that accident he was unable to speak (at 4 years old) and my mom says he was quite a challenge to care for.

I am not my brother.

I obsess about brushing my teeth. I learned not to curl my lip in towards my gums. I have not been told I have a noticeable catch when I speak (and in fact, when I have shared this with others, they have confirmed they have not noticed a catch when I speak.)

I do have special interests, and, being quite introverted it is easiest for me to talk about these interests in order to avoid not being so quiet, but… I do notice when others get annoyed with the subject (in fact, since I don’t appear disabled, they are much more likely to tell me they are annoyed) And when they seem to be ignoring or annoyed with what I am saying…

I feel like I am speaking through my brother’s mouth – complete with receding gums, curled lip, and frequent noticeable catch.

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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: Learning to Hygge

One thing goes in, and several more go out. It has always been the same for me. While other people seem to get used to their routine, and can slowly add other things to it, I just can’t. I am 41 years old (as I write this) and somehow I still keep trying to convince myself I can do this. Get used to my routine, add something else in.

But it never works. I might hold together for a day or two, and then it all falls apart, and I struggle even to keep up with the routine I had previously had no issues with. In fact, I don’t just struggle, I can’t do it. It takes a long time to build myself up to that place again.

It has always been the same.

However this month (January 2018) I took something out of my routine (the pressure to write this blog on a schedule) and then was able to add to my schedule without falling apart. This, I find, is amazing!

Two weeks ago my husband tuned his second guitar for me to use. He showed me a couple of things, and the next day I started practising to a YouTube video. My fingers hurt A LOT!!! but it sure felt good.

For several days, due to the pain in my fingers, I put topical pain relief on my fingertips in order to endure the practise. It worked. It still hurt, but not so much I couldn’t play through it.

About the fourth day I stopped needing the pain cream, and slightly more than a week in I felt more numb than pain. I like practising the guitar. I learned two cords in that first lesson, and have been practising going back and forth in those two chords ever since. It is very relaxing.

I like the repetition. I like the sound. I like that my mind can wander while I am playing, and it doesn’t mess me up right away. I like how happy it makes me feel.

It really does make me happy!

This year, as many years before, I have been praying, “Lord teach me to live well.” I don’t live well. I struggle hugely with depression and anxiety – which is part of the reason I decided not to write so regularly (spread the joy, not the sadness -right?)

A friend of mine got me into researching “Hygge;” a Danish term that doesn’t directly translate into English, but means: coziness, comfort, a ‘homey’ feeling… a good way to live.

Reading about “Hygge” makes me happy.

My Mom has been sending me e-books. Many of them are either books I love to read and re-read, or books on ‘Hygge.” Seeing those books on my e-reader makes me happy.

Waking up to three little faces and wriggling bodies (my girls) makes me happy. Sometimes I have a purring, kneading cat added to that mix. He makes me happy, too.

Walking my girls (or pulling them through the snow in their sleigh) makes me happy.

Practising my guitar, practising my keyboard, researching my special interests (plants, zero waste living, vegan foods, interior design, gardens…) looking through Pinterest… all of these things make me happy.

One thing out, several things in… Some things can change.

I am learning to Hygge, and this month (for the first January in years) I am happy!

 

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Autism: Excruciatingly Frustrating

There is this electric piano that I have in my living room It belongs to my niece, who has been… travelling the world for a couple of years. She asked us to store some things for her, and this was one of those things.

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When she brought it, she thought that I would like to use it. At the time (having had little warning these items were being brought to my home for storage) I didn’t know where to put it. I have a keyboard of my own, and so told her we would just store it for now.

Only we haven’t any good storage in this house, and it just ended up on the floor in our basement hallway. Fearing it would be damaged by flooding (the washer has been overflowing at times, and the one side of our home has been leaking, since when the new roof was put on several years ago, they removed all the gutters and downspouts so the water now comes into our home on one side) I moved things around and found space for it in our living room.

I would have used it then, only I didn’t know where she had put the cords and attachments, and didn’t want to go through her things looking for them. I asked my husband to – this was maybe a year ago – but he never did.

I also asked him to NOT use the piano for storing his things as he came in the door – but of course he does. Of course he does. He doesn’t understand me. He doesn’t understand my need for him NOT to do those things.

Anyway…

Another niece who lives in town asked, since we aren’t using it (I would, only my husband never did find out where the cords and attachments were, so I couldn’t) if she could take the piano to use. I don’t mind her taking it. It would give a place where I could bring my keyboard out and actually be able to use it (so long as my husband doesn’t store things on it, which causes me a lot of distress) but I still don’t know where the attachments are. She would need them to use it, too.

I tried.

I tried so hard to explain to him that in order to use it, she would need to ask our other niece (her cousin) where the attachments were, but…

He never seems to understand me.

He never does.

The longer we have been together, the less he seems to hear. It makes me want to cry. It does make me cry.

“(Her husband) is a really smart guy,” my husband told me. “He can figure it out.”

Okay, so I am stupid for not being able to do this?

It isn’t about being smart, or about being able to understand construction, or electrical systems, or… “She needs to ask where the parts are,” I said… but he didn’t get it. “C can figure it out,” he said again.

Excruciatingly frustrating!!!

It isn’t about being smart. I am smart enough to know that what they need is to ask where the parts are – not to figure out a way to not need those parts.

Sometimes he makes me feel like he thinks I am so stupid – when he is the one not understanding what it is I am saying. This is how people have responded to me all of my life – and I try so hard to explain. And it seems to me I couldn’t be more clear. And they think I am being clear – but then they twist my words, or interpret them to mean something they never did – and they are so sure they are right they don’t give me a chance. They just keep trying to correct my correction to fit in with what they believe I am saying…

But I am not! What I am saying is what I am saying. There is no need for interpretation. There is no need to ‘look between the lines.’ It is all right there, clear as day. I don’t know why they can’t understand.

I don’t know why they respond to me as if they think I am stupid. I am not stupid. I know what I am saying – they are the ones who misinterpret.

They have always made me feel like they think I am stupid, and it hurts more than I can express – but he is my husband! He shouldn’t be making me feel that way.

And when they make me feel that way? I become so upset I shut down – which only goes to confirm for them what they believed about me in the first place.

So, so frustrating. So painful. So wrong.

Will they ever learn?

 

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Autism: Sometimes I Can’t

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

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

Phones are hard for me. Really hard.

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

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

And we were waiting for a visitor.

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

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

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

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

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

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

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

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

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

Sometimes I just can’t.

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