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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: 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: On Taking the Initiative

“Just get in there and try,” he told us. “It doesn’t matter if you make a mistake (though you are sure to hear about it) so long as you are actively participating.”

But I didn’t know what to do. I didn’t know how to do it. I had never seen it done before – and even if I had, I needed to ensure I understood it completely before I tried to do it in front of a group of people… or even just one if he was prone to yelling or criticizing.

So I held back. Again and again I held back and let everyone else try first. I learn first by observing. It isn’t until, through that observation, I understand it that I will try to do it on my own.

Such was always the case.

The most common comment on my report cards growing up was, “Does not participate.”

fireplace me

Of course I didn’t participate. First of all, I get paralyzed when other people are watching me – so a classroom of kids was not the place for me to try anything. Maybe if they showed me how, then left me to work on it alone, but that isn’t often how things are done.

So I was seen as incapable; maybe I was. I sure came to believe over time that their assessments were correct.

Or maybe I just couldn’t learn the way they were teaching – or maybe I just couldn’t demonstrate that I understood what they were teaching because, well… I get paralyzed when people are watching. That hasn’t improved in time.

So I can’t learn well in groups, and I can’t just ‘jump in and take the initiative.’

There is the word: initiative.

I have been thinking about this quite a bit over the past few years – especially since I was in my Residential Construction course at the local college; for ‘taking the initiative’ was strongly… not even encouraged, but expected.

This is something I am not at all good at. I need to know exactly what my job is, what is expected of me, how I am supposed to do it, where things belong, how things are supposed to be, what the rules are… I have to know.

If initiative is what is expected, I am overcome with anxiety, and can’t move – or think – or act – or…

I have also come to the realization that although I know ‘initiative’ is valued throughout society, it is not something I value in other people. I mean…

While I am thankful if people try to do things that are helpful to me, just… mostly when people do things ‘for me’ it really seems to be based on who they are, not who I am. So it comes out… wrong. All wrong for me. And I get… thrown off… and they get upset because they were trying to help, but it didn’t help. So I think, “why didn’t you just ask?”

Just ask.

I think that a lot of the reason I struggle in ‘taking the initiative’ is because I am sure that what I chose to do, or get, or… whatever, would not be what they had in mind – just as when others jump in without asking me how I would like it, it isn’t what I had in mind; and therefore I then have to find some tactful way to tell them (without offending them) that what I needed was different than what they did; and I struggle to communicate good things, and feel completely incompetent in communicating harder things like this.

 

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Autism: Transitions are Hard

We had been there for a week, and it was time to go home.

Transitions are hard for me. Especially bigger transitions, like moving from comfort to discomfort. Okay, maybe that isn’t suggestive of a ‘bigger transition,’ but it sure feels that way to me.

I woke up knowing that we were leaving, and counting up all of the things that needed to be done. Very quickly I was becoming overwhelmed, and I hadn’t even opened my eyes.

“Never mind,” I thought to myself. “Block it out. You won’t have to do it alone.”

And that did help for a while.

We didn’t have a set time to be home, and though it was going to be a hot (and smoky from all the wildfires close by) ride home, we decided to wait until after lunch to leave. My husband and I planned to swim first – and my girls would have their ice packs in the crate with them as we travelled. Hopefully it wouldn’t be too unbearable.

We started packing up together, but then when I went down to start bringing things up from the ledge where our tent was set up, his cousin (second, I think) who was up with her friends started visiting him. I ended up having to bring everything up by myself after all.

And I had a bad back.

He knew that. It had been bothering me for many days. There were lots of reasons why my back hurt:

  • I had been picking my girls up out of their pen instead of using the door.
  • It had been a bad allergy season, and allergy medications leave me prone to back issues.
  • We were sleeping on the ground in a tent – and while we had foam mats, and a foamie to sleep on, I could still feel every bump and indentation below me, and had the bruises to prove it. I guess I am too old to sleep in a tent – but the campers were all taken.
  • I had been mainly sitting on benches without backs, and I really need the back support.

On top of that, I get really bad (scary) pains in my chest and arm when carrying things up and down hills – and when we arrived, he had also left me to carry everything down (I am sure he was doing something – probably watching my dogs or something as I asked him to, or unloading the food up above – but I needed his help and he wasn’t there.)

So I was upset. Of course I was upset.

“It wasn’t right that you left me to bring everything up by myself,” I told him.

He said he had been getting things in the top rack – but that was before I was bringing things up from the tent; while I was still packing things up above. The whole time I was bringing things up, he was talking to his cousin (who had offered to help, but ‘we were okay,’ and we were until they stopped him from working to visit, and I was left to do it alone.) Every time I came back up the hill, there he was, in the same place, talking.

And my back was hurting. And my chest and arm were in pain. And I was overheated, and exhausted, and overwhelmed. And melting down. He wasn’t there, and I needed him to be. My husband is a serving kind of person. He is there to help, well… always. It is what he does. So when I needed the help, and it was his work too, I counted on him being there. I expected his help. And so when he was distracted, and I had to do it all alone? It was all just too much for me.

I needed him there before I even began because transitions? Transitions are hard.

July 2017 008

 

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Autism: Apologies

There is this thought that continues to creep into my mind that I don’t love my husband as I should. Perhaps that isn’t the best way to put it, as once written, I suddenly get a picture in my mind of shocked responses from the people who are reading it. I do love my husband. I even like my husband. But I still don’t think I love him as I should.

Easter 2015

The thought grew stronger after I had written my post about wet gloves. Though all I wrote was true, and reflected accurately my experience of the situation, it wasn’t… edifying is the word that comes to mind – towards him.

So I had this constant though in my mind that I should revise the wording of that post. I went away camping for a week, and all the time fully intended to alter it when I got back home, before its scheduled release the following Monday. When I got home, however, I re-read the post and concluded that it was an accurate portrayal of my experience, and to alter it would be… almost a lie. I couldn’t do that.

While I don’t think my response to the situation – though admittedly much more intense than other people might have responded – requires my apology (I stick to what I wrote, and what I felt about that) I do believe I need to apologize for the way he came across – not only in my post, but in my thoughts as well.

It is difficult for people to understand struggles outside of their experiences. It is difficult for people to be able to consider how what they do might strongly affect another person. Especially in terms of such things that most people don’t have strong reactions to – such as heightened sensory issues, or even allergies.

For instance, I have a severe egg allergy. Every year when I go camping, and other people are around, the others seem to have a really difficult time understanding the allergy. They want eggs for breakfast. Pancakes are cooking on the grill. They want to add eggs to a different section of the grill. They don’t understand why I ask them to wait until my food is finished cooking before they add theirs. It isn’t that they are meaning to hurt me, but that they honestly can’t see why this is a problem.

It is the same with wet rubber gloves. Most people do not have sensory issues to the extreme where a bit of water accidentally dripped inside of rubber gloves will cause a full meltdown. It isn’t that when such things happen people are intentionally doing something to hurt me. I know this. It still hurts, but I know it isn’t on purpose.

So when I wrote, I wrote from my experience. My sensory issues cause me pain. Real pain. So it possibly comes across as the person who caused me that pain maybe should have known better. Maybe should have understood. It isn’t… edifying.

The thought continues to come through my head that I don’t love my husband as I should. So how should I love my husband?

Unconditionally.

Yet unconditional love is hard. Really hard. Nearly impossible for an easily hurt, easily offended sinner such as I am. In fact, for all relationships I have had, there is only one person I can think of that I have even come close for – and that is my son.

When my son does something that upsets me; or does things I wish he wouldn’t; or does something that hurts me, or someone else, or himself; or takes the wrong path, or… in that moment what I want most for him is that he overcomes the issue and does better next time. What I feel is a strong desire to reconcile that drowns out all thoughts of pain, or hurt, or anything negative. “See what you have done. Overcome it. Let it go.”

I think everyone should be love like that. I think that is the love my husband should have from me. So I pray, “Please Lord, teach me to love my husband as I love my son.” And I say to my husband, “I am sorry for not loving you like I should. Please be patient with me. God isn’t finished with me yet.”

 

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Autism: What They Don’t See

The week was hard to begin with. I mean… the appointment on the Monday was one I had been dreading for six months. It caused a lot of panic, and nearly constant fixation on my inability to communicate well with the doctor. How was I supposed to say what I needed to say in a way that she would understand me?

She summed up the issue very well – in the very moment she was trying to ease my stress over the issue: “I think you are being very clear,” she told me.

And that is the problem. I think I am being clear. She thinks I am being clear. But, like what happens with most people who talk with me, when she summarizes what she believes I am saying, she is completely off the mark.

So what was I so afraid of? That.

People are so sure that what they are hearing is exactly what I meant, that they won’t even accept when I try to put it in another way to let them know how wrong that was, they don’t believe me. So as a result, they treat me as if what they believe I am saying is actually what I meant to say – and for the most part, it ends up being the worst possible response to my issue.

Anyway, the appointment that caused such distress in my mind for six months lasted all of fifteen minutes, and then was done.

Yet the week was still to come.

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I guess that in most people’s lives, there are a lot of different things that go into a week: work, friends, church, cleaning, shopping, appointments, socializing, phone calls… but for me, if I have one appointment in a week plus church, that week feels busy for me. Anything more becomes overwhelming.

That week, however, started with church, had an appointment thrown in, a shopping day, a friend visiting, and a wedding. Impossible! Stressful. Exhausting. Overwhelming.

It was a lot!

Four days of things outside of routine are at least three too many – even though the appointment only took up an hour of one day (most of it waiting to get in,) the shopping took two hours of another day, and my friend’s visit took another two hours of another day. Five hours spread over three days, plus a wedding to attend.

Written down, it doesn’t seem like much – I mean, I don’t even have to work. In truth, though, I was completely overwhelmed before the week even started, and am still exhausted and panicking two days after it has ended.

I am aware that what I do is nothing compared to how other people live – but at the same time, I think other people are quite unaware of how much panic, anxiety, preparing before, analyzing after, emotional and intellectual work goes into such activities for me. If they did, I think they wouldn’t be surprised that I am unable to live with even that much going on in my life, let alone expecting me to do more.

 

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Autism: What Are You Afraid Of?

As always, I was early for the appointment. I am always early. I have to be. As the minutes tick by before my appointments, or my shift at a job, or the start of school, or… my panic grows. By about thirty minutes before I have to be anywhere, I am in a full blown panic attack, where the only relief comes from ‘getting it over with.’

So, like having to go swimming in a cold lake, I eventually have to just ‘jump in.’

August Vacation 2016 015

That doesn’t mean that when I get there I will be ready to do anything – talk, or work, or… Being early does help me in that once there I am no longer panicking about being late, or the car not starting, or forgetting to go (not that I ever do, but the fear is still there) or…

It does help in transitioning me into the new environment. Transitions are hard. I need to give myself a lot of time for them. Without that extra time, I feel as if I have been shocked, and nothing beyond that moment goes or feels right – whether that is a half hour appointment, or an 8 hour shift at work, or…

So I was early, and she was late. That is usually the case. Doctors are busy, and appointments go over, and they have to write things down, or do whatever it is they do to complete one appointment before moving on to the next.

For this appointment, I have been struggling in anticipation… no, dread, for the past six months. And as the day approached, and the moment got closer, that panic only increased.

10am came and went, and I knew my distress was noticeable. When I am coming to a full panic attack, I cross my arms, and grab my shoulders with my hands. I guess a weighted blanket would help in that moment, but… it would look silly, and that would make me more anxious. I wish I didn’t care about what other people think – life would be so much easier – but I do care. I care a lot.

It was 10:15 before she came to get me.

She asked me how I was, and I couldn’t answer. I don’t like that question anyway. It is too open ended. Too difficult. Not the right place (walking down a public hallway) to express anything other than ‘fine’ which anyone looking at me in that moment could see was a lie.

It isn’t that I purposely didn’t answer, but I couldn’t. When my anxiety is that high, there is a block in my ability to communicate, and it is very hard (impossible even, at times) to work around.

She asked me two more open ended questions that I was unable to answer (“How have you been?” and “What have you been doing?”) before she came to one that I could speak for, “Have you been meeting with (your therapist)?”

“Why are you so panicky when you come in here?” she asked me. “What are you so afraid of?”

Well… I try to be clear in the words I am using, but what I am saying is so frequently misinterpreted, and my words get twisted, and… you have so much power over me. What if you decide I can work, and I get taken off of disability – but like always, I fall apart, or fail, or crash, or can’t get started… then everyone looks at me like I wasn’t trying, and I try to express how hard I was trying, and they look at me like a failure, and I am filled with shame because I couldn’t do what you said I should be able to do – so they believe you, because you are the professional, and I must just be lazy or something, and…

“Because I try to talk, and I think I am being clear, and then people don’t understand what I am saying,” I answered.

“Well, I think you are being clear,” she answered.

And therein lies the problem… I think I am being clear, and they think I am being clear – but when they speak their interpretation of what I have been saying, I find they didn’t understand at all. So I try to correct them, but they hold to their original interpretation – and everything falls apart from there.

 

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