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Autism: Possible, Not Easy

It makes it possible. Not easy. Not easy.

These are the words that often run through my head as I am riding. I have been riding my bike a lot lately. My bike. Our bike. We share it. I ride it. A lot.

A couple of months ago my husband got a call from his brother. Not at all unusual. He came to my room where I was writing in my journal and asked, “Do you think (our son) would like an electric bike?”

He wouldn’t. He doesn’t like bikes. He doesn’t much like being outside – if it is too hot, or too cold, or too ‘buggy,’ he doesn’t want to go at all. Plus he finds bikes uncomfortable. We might think it would be useful for him – since he doesn’t drive, and there is no bus service here, and we are surrounded by houses and farms (no stores or anything close to us.) We might think it would be good for him, but he wouldn’t.

“No, he doesn’t like bikes,” I answered, “He thinks they’re uncomfortable.”

I would like an electric bike, though,” I told him.

He talked with his brother some more, and a few weeks later, we had an electric bike. Since my husband’s nephew works as a director for the company in Canada, and two of my husband’s brothers also bought e-bikes at the same time, we got an amazing deal.

Still I felt guilty. When someone buys me something, I always feel guilty. It comes from my childhood. It comes from trauma. Plus I worried that I wouldn’t use it enough, or was spending too much (I don’t work, after all) or like most of my decisions, it would be a bad choice.

And then the bike arrived, and my husband rode it home from his brother’s house.

As another brother (my husband has lots of brothers!) drove in with our van (that we bought off him 10 years ago – though I guess that’s not important to the story) and visited with me while we waited, I understood that my husband wanted the bike, too.

In fact, by the words of the people he knows that have talked to me about the bike, it sounds like we got the bike for him. I am okay with that. It removes some of the guilt of having the bike bought for me. We did get a great discount – but it is still an e-bike, and still wasn’t cheap.

Anyway, he works 4 days a week, and is too tired most of the time when he isn’t working to want to ride. At the point of this writing, he has gone about 35km, and I have gone more than 420km!

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The thing is, where we live in British Columbia, Canada, every direction has hills. Steep hills. So since moving here, riding has been pretty much impossible for me. Other people might be able to do the hills. I have too many barriers. It didn’t matter how hard I tried, I couldn’t do them. I couldn’t.

And then we got the e-bike. And then I started to ride. And unlike driving a car, I found that riding a bike calms me – even if it is technically more dangerous. I also understood (though I have lived in this house more than 14 years) that half a kilometre away from me are rural properties – for a long ways. I love riding by the farms, and seeing the animals and trees and land. I love that I can ride, and hardly any vehicles come past me. I love it!

So I ride. Day after day. First 5km a day, then 10. Then one day I decided to ride to the beach 5km away. It is a short drive, but I never drive it, so I didn’t really know what to expect. Half the way there, I started saying, “uh-oh!” It was all downhill. So steep downhill that I pretty much had to ride the brake. I didn’t know – and now I would have to ride back up.

On the way home, I honestly thought I would die. My chest hurt so bad, and I couldn’t breathe. I prayed the whole time to be kept alive for the sake of ‘my girls’ (my dogs) and my son. When I got home I told my son I wouldn’t likely do that trip often.

Two days later, I did the trip again. Three days after that I did the trip again. By the fourth trip, I didn’t feel it was enough, and (after getting back up that hill) I took a detour to make the trip longer. I now ride about 15km each day – and I seek out the hills.

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But the hills??? They aren’t easy. Not even on an electric bike. It doesn’t make it easy, but it does make it possible.

And as I was considering this thought again, I started comparing it to accommodations, supports, and income assistance for people with disabilities – and I think these are pretty much the same thing (or at least that should be the goal of them.) They don’t make life easier than other people have it. But they should make living with a life quality similar to others without disabilities possible.

Not easy. Possible.

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Autism: Much As I Can Handle

For anyone who would have seen me the past few weeks, I believe the general opinion was that I was healthy enough to work. Day after day from early in the morning until later in the afternoon, I was out in the garden, with my girls. I was turning the soil, and pulling the weeds, grass, rocks, and lots of June bugs out of the ground, trying to get the gardens ready for planting.

The work was steady, and repetitive, and took a lot of work – though not a huge amount of focus.

At the end of each day, I was dirty, sore, and exhausted. Yet each morning, as long as the weather cooperated (and to a smaller degree when it didn’t) there I was. Working.

There was this time pressure to complete, as spring was coming fast. Well… it was spring, but… the last frost date, or whatever. We have a short growing season, and this year even shorter as it was a longer winter than normal. So things need to be planted ‘on time’, or so I have read.

Though I study the material, and try every year, I really don’t know what I am doing in the garden. But this task was pretty simple. Dig and flip the soil, crumble it in my hands, remove all weeds, grass, rocks, and bugs that look like they might eat my plants, throw the soil, worms, and ground beetles into the ‘good’ pile.

People walked by and commented, as they do. I tried to reply appropriately, and went back to work.

My ‘girls’ chased anyone passing, and ran through the garden, and very much enjoyed themselves. I gave them the attention they needed, watched for eagles (that live just down the road), fed them on their schedules, ate on mine, and went back to work.

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Unusual to me, I was somewhat thankful for the rainy days, for then we had to stay inside. Perhaps I should have rested then, but there was so much to do inside in preparation for my mother’s arrival, that I was nearly as busy inside as out.

For three weeks I worked hard, and anyone who saw me would likely think I was well enough to get an actual job.

Though it was something I really wanted to do, however, I started to crash at about the 1.5 week mark. By 2.5 weeks, I was really pushing myself. Those last two days I almost didn’t make it through – and had it needed more work, I couldn’t have done it.

Three weeks for a job I liked, that I could do at home with my girls, and where I was mostly alone doing something for myself. Three weeks, and I crashed.

And there lies the problem of seeking another job at this point in my life. I would go into the interview having to prove to the manager that I was the best person for the job (and in the beginning, I just might be.) I would take the job with everyone hoping, and even expecting, that this would last. It would almost be like I was telling them they could count on me – for what else are we really saying when we agree to take on a job?

Yet I would know it was a lie. I would give that job everything, because I can’t give less (for I am always concerned about what people think of me) and I would try really hard to keep going. But, as has been true pretty much my entire life, and certainly from the start of high school at not quite 14 years old, the crash would come.

If it was a particularly good time in my life, and the job was one that suited me well, I might (if not asked for too much change, or too much time, or too much…) last 5 or 6 months before I fell apart. And then, if it was still something I was enjoying, and I was getting along with the people I worked with and for, I might be able to hide the fact that I was crashing from the people at work for a few months more.

At that point, no amount of effort on my part – or incentive from outside – would prevent me from falling apart even there. Meanwhile, the effort would have taken a strong toll on my marriage, my home, and my emotional state.

And that is for a good job, that I want to succeed at.

If it were any less, I would still give my all (for I can’t give less) but I would likely not last a week before I was really struggling, and in less than a month, everyone else would know it.

So here I am, doing the very best I can to take care of my home (which is of top importance for me) and after three weeks of working hard, I am crashing. Thankfully I am at home. This is my work right now. Thankfully, though I could lose the work, and have everything come crashing down around me (it happens) a few days, or even a few months of ‘crashing’ won’t be viewed as a public failure. And that is about as much as I can handle.

Yet I always feel pressure from outside that I should/could be doing more.

 

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Autism: It Is Enough

With the weather nice, and all of this extra energy that I have had for the past 2.5 weeks, I have spent a lot of time in my garden. There is still a lot to do before it is ready for planting, and there is only about a week and a half before it is May.

I am so thankful to have this energy – and for those of you who have been following this blog for a while, you might know it is highly unusual for me. Having energy means that I can get things done, which at other times overwhelm me. It is perfect timing for gardening season. Of course, I have no idea how long it will last, and I might wake up in the morning completely drained – and then not have energy again for months.

All I can do is use what I have, and hope it is enough to carry me through.

Yet… one thing in, for me, means several things left out. True, I have energy – so I can move, and I can keep going, but… Now that I am out gardening all day, I am not practising my keyboard. I am not spending much time on Pinterest. I am not doing the research to plan out how to garden properly. I am not exercising… okay, well I am exercising in the garden, and I am going for walks with my son, but I am not using my elliptical machine while watching documentaries. I am not spending much time cooking or planning my meals – so I am eating quite a lot of lentils lately.

People have always responded to me when I am doing something well as if I should then try to add in something else. For example, when I went to my Psychiatrist and told her I was learning Spanish, and Latin, and practising keyboard. She pretty much dismissed the activities, decided I was okay, and suggested I then go look for work.

The very idea caused me to crash for months, but it isn’t just that. It is always this way. When I am doing well in something, I am doing well in that thing. It is definitely not a good idea to suggest I try doing more. Not only will I fail at the new thing, but whatever I was doing that was good? Yes, I will crash and fail in that as well.

Often busy lives are compared to juggling. Okay, so when I am struggling, I can rarely catch the one ball I am tossing in the air. If I am doing okay, I can juggle that ball, and maybe one other. But while people are watching me juggle the two balls, and see I am doing okay, they automatically want to throw in a third – but then all the balls fall. I can’t do it.

I am not actually good at juggling. I guess it is not a good comparison for me. When I ran my daycare, though, I had these juggling scarves. They would catch the air and float slowly back down. I could juggle two, and sometimes three of the scarves, and really enjoyed doing it.

So trying to continue with this comparison to explain my ability (or disability) to others – it is like typical people are skilled at juggling two or three balls at a time (work, family, friends), where I am maybe able to juggle two or three scarves (blog, Spanish, keyboard.) ‘They’ see me doing okay with my scarves, and try tossing their balls to me to (work, for instance) and everything comes crashing down.

Or I might be able to add in something (gardening) but only at the cost of another (struggling to get my blog written on time, not practising keyboard…)

I am not good with metaphors (is that even the right word?) but I guess what I am trying to say is that I would hope that when I am doing well, rather than trying to add more, people would instead respond to me as if it were a good thing that I was doing well – and leave it at that. Don’t promote. Don’t add to. To be doing well is a huge achievement in itself, and is more than enough for me to work to maintain.

back garden

 

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Autism: Really Wanted the Help

It has been four months since my last appointment, and is another two months until my next. From the struggles I am having with it, however, I am beginning to understand that going to see her does not in fact help. I really hoped it would.

When I first went to her, I was full of anxiety… panic even. But she acknowledged that she did believe I had Asperger’s, and gave me the diagnosis. She told me she would help. She heard me express my past troubles with medication, and decided to try something else, and start on a very low dose. It was hard to go and talk to her. It was hard to talk. But I was thankful that someone had finally heard me.

Then at my next appointment, she heard me again – and though I didn’t ask for it, and though it terrified me, she took me off of work and put me on medical leave. It was something that had to be done, and if she hadn’t seen that, I would have fallen apart at work and lost my job anyway. It could have been so much worse.

I needed to not work. In fact, I really needed to not work all of my adult life – and school in my teen years? That was bad, too. I needed to not be working, and really if they think about it, people should be amazed that I held on as long and as well as I did (even if it looked like failure to them) instead of being disappointed that I couldn’t keep going forever. But they don’t see inside of me, and none of them knew – not really. Hardly at all.

So it was good that I went to her. Because I did, I was finally seen. I was diagnosed. The multiple challenges were put into words so maybe people could know, even if they couldn’t understand, that the very act of living is often overwhelming for me – and working on top of that? Impossible to keep up.

At least they could know.

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And she referred me to my therapist – and though I believe I am very frustrating to her (since she gives all kinds of good ideas – which I have already tried, and found not to work; or hadn’t tried, but can’t seem to figure out how to work with them, or…) I really do believe she not only hears me, but remembers me, and cares. I also think that though she is not Autistic herself, she really understands what she is talking about.

I don’t visit my therapist anymore – but that is because she saw how anxious I was, how hard it was to talk, and how much better I am at communicating through writing – so I email her instead. See? She understands.

The doctor tried. But she doesn’t understand Autism – so she tried to treat with medication. I did very much hope that she would find something that would work (and not make me sick) but the more she tried, the more obvious it became to all of us that my body just can’t handle such things.

Even then she said she would continue to help me, though I could not take medication – but she seemed to be lost on how to do that.

My next appointments became harder and harder – and in fact, she tried to stop them altogether. “I don’t think we need to book another appointment,” she said, “if you are having trouble, you can call.”

Ummm – no I can’t! Phones, remember?

So I told her I wouldn’t call – not even if I needed to, and she booked the next appointment six months later. And each appointment became harder.

At the last, her suggestion was that I find work… it didn’t make sense – she took me off work because my anxiety was so severe. I did get diagnosed. My assessment and paperwork was enough to get me long term disability without question, and several other types of support (which I haven’t figured out how to use yet – I think I need support to figure out how to use the supports, but I don’t have that.)

Yet nothing has reduced my anxiety, save not having to work (and even then I struggle a whole lot of the time – as you might get from reading my blog.) So how can her solution to my struggles be to take me away from the only thing that has helped?

And the truth is, she doesn’t seem to remember me. She doesn’t seem to know me. She doesn’t understand.

So for months I have been upset about that suggestion, and the fact that she dismissed the positive things I was doing in my life (like learning Spanish, playing the keyboard, studying Latin and Grammar, and writing my blog, and…) For months I struggled even to get back into several of the things she ignored, and some I have never been able to return to. For months after that visit, I struggled with really bad depression.

To be honest, that appointment made me suicidal for a while – I mean, if nothing I do that makes me feel good has any value – and the only way to make my life worthwhile would be to find work, which caused me such anxiety that I don’t want to live – what is the point of living?

It took me a long time to settle back into a good routine after that. Is it any wonder I am terrified to return for my next appointment?

I think next time, when she says she doesn’t need to book another appointment, I will agree – and really hope that isn’t reflected as me refusing help, so I lose the few supports I do have. I mean, I really, really did want her to be able to help me.

 

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Autism: Real Desires of my Heart

Yesterday I spent a couple of hours in the afternoon taking multiple career quizzes on a job site. I do this a lot! Although the responses have never matched with who I am (I have no idea what I am doing wrong, as I always answer the questions with complete honesty) I still have hope that one day something will be listed that gives me an “aha!” moment.

True, that has not happened yet, despite the many years I have been taking these quizzes, but maybe someday I will find the quiz that does work for me.

The multiple quizzes I took yesterday were all on the same site – a work site for Alberta, Canada. I don’t live in Alberta (though not far away, either) but I will take anything I can get.

When I got my results, it came up with things like accountant, or statistician, or tax auditor, and other jobs that require strong attention to detail and a lot of time staring at a screen. It isn’t that I am bad with numbers or anything, but that level of detail and focus on a screen leaves me both severely anxious, and exhausted – which leads to depression. Above that, focusing on numbers that long leaves my eyes stinging, and my brain fuzzy – so the focus I enjoy much of the time would still not help me maintain the level of accuracy required for such jobs.

No good.

Just like other quizzes I have taken in the past, which tend to list things like physical therapist, acupuncturist, or such things (when I can’t touch people I don’t know, and hardly touch people I do know, and am unable to work with other people in such a capacity) the list doesn’t in fact reflect who I am.

I suppose that is because there are so many facets to my ability, or disability, that the standard questions don’t take them all into account – which is completely necessary for me. For instance, I have a lot of trouble with pain in my feet, which radiates up my legs and causes back trouble. That and the fact that I am so often exhausted excludes any physical type of work for me.

Then there is the Autism, which includes severe sensory issues (food, touch, smell, loud or repetitive sounds… all out!) My anxiety grows to panic when dealing with people at all – and that includes one on one. Although I can focus, I tend again towards panic and depression when I am expected to maintain a high level of accuracy, or spend a long time focused on something outside of my current interest. I might be able to maintain an accuracy sufficient enough for my employer, but the cost to my mental health is very high for me.

After taking several quizzes and questionnaires, I came to a part of the site which asked me to imagine several scenarios: Imagine money is not an object; or, imagine you had a magic wand, and could make your life anything you wanted… there were several similar ideas followed by the questions: Where are you living? What are you doing? Who is with you?

Of course, I can imagine things – especially if a magic wand is included (which, being a Christian, is not likely a good thing – but I feel so very powerless in life, the longing is hard to shake.)

So I answered:

I am living in a small cabin by a lake and far away from people. I am living with my husband, son, and many pets. We have really good internet service, but in many ways are self sufficient – wood stove, large food garden and fruit trees, well water, etc. I spend my time writing, taking care of my pets and garden, and swimming and kayaking on the lake.

sunflower-garden

I like the idea of that life, for in my mind it feels so calm and quiet, and the very thought leaves my entire body and mind sighing in relief. I want the lifestyle, but… it wouldn’t pay the bills. Writing for income is another recommendation that doesn’t fit me well, for I can’t handle criticism at all! It destroys me. And writing is one of those professions that gets a lot of criticism – which is the reason I have not shown the book I did write (though I do like it) to anyone else.

Also, despite the fact that I try every year, I haven’t got the skills or the energy to grow much food even where I am. Nothing but my imagination can bring me to a place where I consider I might be able to do this – and then, in my mind, I have some type of magic that makes it easier for me. Bad.

So while the exercise was a lot of fun, and for a while in my mind brought me to a place where I found peace and contentment (the real desires of my heart) it didn’t actually help me to live within the reality I have been given.

 

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