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Now!

Reflections of time shining on the surface

A glow of fear and pain

Wishing it would never be shown

Wishing they didn’t need to know

But here I am again.

Words echoing in my mind

So much that I need to say

Rattling my brain, turning away

Why do I have to go back to that day?

Trying to find where to begin.

A great escape behind the wall

A place to hide, to shine, to cry

Trapped inside, searching for a key

To unlock the chains and set me free

But where do I go from there?

Afraid of the world flowing past outside

People who don’t understand

So much power over me

Deciding what’s right – but can’t they see

All I need is some help from a friend.

How to express what they’ve never known

Living a life where one doesn’t belong

Trying to fit in a world that rejects

Anyone different from them and expects

Us all to be the same.

Shaking and dizzy I walk in the room

Working to gain the strength

To say what I must, though the words won’t come

How do I tell them how I’ve overcome

When I know that I haven’t – yet.

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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: 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: Christmas 2017 part 2

Christmas day itself went pretty well. My husband bought cat toys for my son and I (strange, maybe, but for us it was great!) The cats were delighted, and were running all over the place chasing their toys. So much fun for us to watch. Two weeks later and they still spend a lot of time playing with those toys, and Finn even brings hers up to the table with her to hide from the others when she isn’t playing.

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We also made a puzzle. Last year we spend 5 days on a 1000 piece puzzle only to have Finn pee on it on the fifth day (she decided to move from her bedroom to the dining room where we had the puzzle – and I didn’t understand in time to transfer her litter box with her.) Disgusting, and very frustrating.

So this year we did a 300 piece puzzle. It was challenging enough to get our minds working, but easy enough that we could complete it in a few hours. Perfect! And for three strong introverts, that was about as much time as we could happily spend together before needing our space.

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My husband had that week off of work, and a few more times we got together to make other puzzles of the same size. I would say that was good.

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But the depression still had a strong hold on me, and by December 30th, I was as low as I’ve been – and nothing especial even happened save that my husband gave away something I wanted – even after I protested and said I still wanted it… that hurt. It hurt a lot – but the depression was already there before that happened.

Plus, even though that was hard on me, it couldn’t possibly compare to, say, the day we had our children taken. Or the day my dog died. Or any number of truly horrible days that I have lived through.

Yet the pain was bad enough that I honestly didn’t want to live through it. And I think that maybe the only reason I did get through it was that in that level of depression I had a crisis of faith (which happens when my depression or anxiety get so bad) in which I was convinced that God didn’t want me (no one else did after all) – so if I died then it would have sealed my fate, and I would have been in hell forever.

I guess I should be thankful for that.

The very idea of spending eternity separate from God is more than I can bear – and yet for that fear I have to bear the pain of that fear to ensure I don’t spend eternity separate from God. I suppose that those who don’t share my faith couldn’t possibly understand this, and those who do share my faith, but don’t experience the shame and despair that allow these spiritual attacks (I never doubt that God exists, or that He is good – only that He wants me, or that I am actually saved)

It was, maybe, January 2nd before the depression started to lift. Even then, a week later, I am still in a battle. Some days… some months… some years, even, it is tough. Tough to live well. Tough to be in this world. Just… hard.

 

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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: Loads and Burdens

This sadness has been overwhelming me.

  • Does God want me?
  • Am I saved?
  • Why do I fail at everything?
  • Why am I so bad (why do I struggle with things other people don’t seem to?)
  • Will I ever do good (will anything I do have a positive impact on the world around me?)
  • Does anyone want me (will I ever feel like I belong anywhere?)

I think that maybe Christmas is a difficult time for me. Anyway, it has been hard this year, and I am feeling overwhelmed and shutting down, even though I haven’t done anything for it yet.

Time is speeding up, or I am slowing down, or… How did Christmas come again so fast? I am not at all ready, and I look at the decorations as if… as if people put them up in May or something, and it all feels so wrong.

Time is speeding up for me. I go to start something, learn something, research something, and suddenly the day is over though I have done nothing. It is very frustrating. Is it any wonder I wish this life allowed magic, or cheat codes to get through? I don’t expect to win any awards, or accomplish any great thing anyway, but I could sure use some help to get through the day and take care of what I have without being so overwhelmed all of the time, but then…

Loads and burdens.

My pastor talks frequently about loads and burdens – how some people have heavy burdens they won’t share with other people for fear of asking too much of people, and other people ask for help with loads that they should learn to carry themselves.

I have a lot of burdens, this is true. And sometimes I ask for help with them, but mostly I don’t. Other people don’t understand, and can’t seem to help much anyway.

But then I guess what I struggle most with – day to day living – people would consider loads. I know they are… loads, that is. I should be able to handle them. Other people do. Other people are able to do all I struggle with and so much more. I should be able – but I am not.

Loads and burdens.

I ask too much.

Having said all of that, I am struggling these days. I have been writing this blog for nearly 2.5 years – longer than I have ever kept going at any type of work in my life, without a break. But I have also been pushing myself really hard to keep going these past 7 or 8 months or so.

I need a break.

So in light of Christmas coming (and despite how hard this is for me to admit even to myself) I have decided to take some time off from writing my blog, and think that Christmas is probably the time I need to do that.

I am hoping that a month will be enough, and plan to start writing again in mid-January.

Until then I want to wish all of you a Merry Christmas, and a Happy New Year, and to thank all of you for your support over these years.

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