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Autism: Independent Living

While I have not been posting on my blog site often in recent months, it isn’t as if I have stopped writing altogether (as if that would ever be possible!)

Several months ago, right after I had struggled in getting my vision testing done, I did a Google search on what to do when vision testing doesn’t work for you.  I came up with the site “Quora,” and have been answering questions on there ever since.

For example, the question from this morning was:  “Can adults with Autism live independently without support?”

So I answered it:

Some might be able to. It really depends on many factors.

I, for instance, am what would be considered to be “high-functioning.” I have an average or above IQ, am (sometimes) verbal, can read, write, completed college with honours, have held a job for months, even years at a time…

But…

I have a tendency to panic attacks, am prone to depression, struggle with time management (time seems to go too fast for me, and I move to slow in it, so working more than a couple of days a week is too much for me and I can’t live outside of that.) I get burnt out easily, and shut down when I am overwhelmed.

When I lived on my own, I could never make enough to pay all of my bills. I wasn’t out spending money on things I didn’t need, but still ended up frequently short on money. Not enough for rent, hydro, gas, other bills. I couldn’t do it.

Also I struggle with abstracts – and thoughts of the future are pretty much entirely abstract. For example, I moved across the country, after completing my Early Childhood Education (with honours), to open a home daycare in a community that needed daycare.

My view was that I was allowed to care for 7 children, including my own. (5 under 5.) So even if I only filled those 4 spaces left for young children, I would have no trouble paying my bills. I took out a loan, moved across the country (fully expecting I would have no trouble flying home a couple of times a year to see my family) and opened my daycare.

What I could not see was that most of the care I would provide would be part time. Those 4 spaces would be filled by 10 children – and frequently I would be juggling and having to communicate to the parents in order to never go over 4 children at a time. Communication was hard. Getting enough income to pay the bills was very hard. Working full time to try and make enough to live was exhausting.

I couldn’t continue long term, ended up NOT being able to pay my bills, struggling to get money to eat, having my gas shut off, defaulting on my loans, and having to claim bankruptcy. NOT because I was out spending money on things I didn’t need, but because no matter how hard I tried (and 20 years later, this is still very true) I could not make enough to deal with everything.

In fact, trying to deal with everything a home requires to run (even excluding money – which had I been diagnosed, and been put on disability, I might have been able to manage) is so overwhelming that my brain shuts down (like an overloaded circuit breaker.)

Running a daycare was not the only factor in my inability to live independently. I also tried working in construction, and working in a small motel. Even in jobs I really liked, and could work at part time, I would become so panicky I couldn’t keep going. I am now at home on disability, as that issue became worse the more I tried, not better.

I am married now, and my husband works and takes care of the bills. He also helps me to socialize, and does the majority of the driving (even though I do drive, the unpredictability of other drivers and pedestrians causes me to panic and become exhausted too fast to actually get much done once I reach my destination.)

Maybe if I had a good level of disability payment support, and lived in a place where I was walking distance to most things I needed (groceries, church, etc.) and was on a very good bus route to anywhere else I might need to get to, I might be able to live independently. As it is, even as a high functioning adult with Autism/Aspergers, I can’t do it.

Easter 2015

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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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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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