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Monthly Archives: March 2017

Autism: Busy Day Tomorrow

Tomorrow I have a busy day. I have to clean my house, and my friend is coming over.

Clean my house and my friend is coming over.

Clean my house and my friend is coming over.

And today that is all I can think about.

I know that tomorrow, I will like having my house clean, and I will enjoy having my friend over – but today I am anxious, so it is all I can think about.

At least twice a week, I clean my house. It isn’t like I do this just because my friend is coming over, yet… two things in one day – that seems like a lot.

I have tried to clean the day before she comes, but with 5 pets and other people living in my house, it doesn’t help. I still have to clean before she comes. I have to clean just as much. So it is no good cleaning early, and I clean the day she comes. Only two things in one day? It is a lot.

I will clean in the morning, and she will come in the afternoon, and we will have a great conversation – deeper than I have with most anyone. And I will love that we are able to talk about such things, when most of the world likes to talk of the weather and sports.

My friend doesn’t seem to mind when I spend half an hour talking about my pets. I love my pets. She gets that. When I talk to others about my pets – because I do – I think they mostly don’t like it. I can’t really tell, and it is hard to talk to them about anything else, because the weather isn’t interesting, but they don’t talk much about those things.

When I talk to my friend about my pets, she talks about her cats, and other pets that she has had, and about how she likes to watch live videos of cats – and that lets me know she likes them too. It isn’t all we talk about, but it does help to get started. Otherwise I might sit in silence, and struggle to find what to say.

I guess from my words it might seem like I would prefer to meet somewhere else, so that I wouldn’t have to worry about cleaning my house on the days she comes over – but that wouldn’t be true. If we met somewhere else, I would feel even more anxious about having to leave the house, and being somewhere I wasn’t so comfortable. That would be harder, and I think she knows that about me. Since she doesn’t mind coming here, and I prefer it when she does, that is the arrangement that we have settled into.

So I know that I will be pleased to have my house clean, and will really enjoy my visit tomorrow – but today I am anxious.

I am anxious, and that means very little will be done today. And as I hear the thoughts repeat in my head, “Tomorrow I have to clean my house, and my friend is coming over,” my mind pulls me to fixations that will calm me:

  • Pinterest
  • Netflix
  • looking at houses on the Realtor website

And that is pretty much all I will be able to do today.

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Autism: Strongholds and Addictions

This week at church my pastor spoke of something that really got me thinking. The message was about the difference between believing in God, and believing God. It was a passage about Jacob and his uncle Laban. At this point in the story, Jacob had learned to believe God, and so lived a life where he trusted God to provide for him.

Laban on the other hand, believed in God, mainly that God was with Jacob, and blessed all he did, but he was sneaky, conniving… basically all the things Jacob had been through his life, but… Jacob was listed as a great man of faith, where Laban turned towards things such as divination, and went to hell.

Divination. That was the part that left me really thinking this week. I know divination isn’t Christian, yet…

I wasn’t raised Christian, you see. I was raised in a family that, for the most part, believed in God, but that was about as far as it went. We celebrated Christmas, and my parents allowed us to go to church with neighbours if we were invited, but they never went themselves. They believed that children should be able to choose faith on their own – which sounds good, but really left me feeling lost and confused.

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The only person in my family who went to “church” was my aunt – my father’s older sister. Growing up, even having friends who were Baptist, or Mormon, or some other faith, my aunt was the most spiritual person I knew. She was especially kind, and calm, and all those wonderful things that ‘Christians’ should be (yet so often fail to live up to.)

Only my aunt wasn’t Christian. I think she believed in God – but her spirituality included Tarot cards, and plumb lines, and psychic mediums. In short, divination.

I loved my aunt. I love my aunt still. As a child, my most fond memories with this aunt were spent in these activities. Not that most of my time spent with her was involved in divination, but that some of my clearest, and most content moments with her was in this area. I believe, though I hardly talked, that she understood this about me – for of all of us cousins, it was me she wanted to take to ‘church’ most.

As a child, I did not go to church with her, but I did once in my teen years. I then went once alone after I had moved away from home, and was living just up the street from that ‘church.’ It was a church where people gave psychic readings – very different from the church I go to now, but I liked it then. The only reason I stopped going was because I was broke then, and didn’t understand the offering part of church, and therefore couldn’t afford to go.

I did go several times with my aunt, as well as with my mom at other times, during their ‘psychic fest’ and had readings done.

As for the rest of the divination activities that my aunt exposed me to when I was young – apparently I wasn’t very good at them. Rather than allowing answers, I willed them (or something like that.) But I loved them all the same. I loved doing them with my aunt, but this was also something I did a lot on my own for many years after.

You see, I live such an uncertain existence, and am afraid so often of making the wrong choice, that I really want that guidance. In fact, it was through these activities that I chose to go to college the first time, and chose to move to the city I have been living in for the past 17 years (so far from home.)

Before becoming Christian, there were many things I did that are not acceptable behaviour in the church – and many of them were things I did regularly. Yet when I turned to not just believing in God, but believing God, I put away these things. Even though they were strong addictions, the temptation was removed, and it was almost easy to let them go.

In this area, however, I have had a stronghold. I did stop using cards, or plumb lines, and such. I did stop going to psychics. I did stop these things – but even now, 17 years later, I still long for them to be allowed.

And then there is my writing. I know that many Christians pray, and listen for God’s response, and some even get answers. For me, though, I write. I write my prayers, and I write the thoughts that come during those times. Mostly I do this because in order to hear, I have to see. I have to see my thoughts to make sense of them – and if God were speaking to me (just like if I am trying to listen to what people are saying to me) I really need to write them down.

As I was sitting and listening to my pastor speak, however, I was reminded of my aunt – and the things we did together, and I wondered: “Is this divination still?”

Laban believed in God, but still he went to hell. I don’t want that for me. I don’t want that for my aunt. So the sermon scared me, as I am so often scared (mostly because in everything I have done, I have found after many years of giving all I had, that I failed – and I never fit in to begin with. If I fail at this, though, it is eternity in the balance.)

All of my other addictions were removed when I became a Christian – but this… this one is hard. For I really feel ill equipped to live life forward – and I really seek God’s hand in guiding me through it. But what if it isn’t God I hear? What if this is divination too, and all is lost for it?

Living is so hard. Knowing what is right is even harder. I wish God would speak to me, and I really hope… I hope he understands that I am trying to live for him. I am trying to not only believe in him, but believe him. I hope I don’t fail at this.

 

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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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Autism: Not A Great Chess Player

When I was a teenager, I had a friend who wanted to play chess with me. He taught me how to play, and I would look at the board, and know how each piece was supposed to be moved. I would play the game, and sometimes I would win.

For many years I would look at a chess board with longing, yet did not spend a lot of time playing with other people (or playing alone.) You see, while I could imagine myself thinking through the strategies, and playing the game well, the reality was quite different.

I don’t actually have a mind that can focus, or make logical decisions playing such a game as chess. I have a great mind for imagining, and so I am able to picture myself as a great chess player, very much focused and enjoying a game that I have a good chance of winning – but I have found over the years that isn’t actually who I am.

My mind is so great at imagining that I can frequently bring myself to believe that I would be really good at something, and/or would really enjoy doing something, and I can actually hold that belief until the time when I experience it for real only to fail. At that point, I wonder what went wrong. I was so sure that I would be good at it that it never crossed my mind that I wasn’t built for such things.

There are many things in my life that I can imagine myself to be good at:

  • parenting
  • playing the keyboard
  • crafts such as sewing, knitting, painting
  • gardening
  • farming
  • home renovations
  • woodworking

But the reality is that though I have had years of practice and even training in many of these areas, I am still not at all good at them. I suppose I just wasn’t built that way.

And the thing is, because I can imagine myself to be really good at these things that I feel I would love to do and be, I find it incredibly frustrating, and depressing, to be faced with the reality that this is not who I am.

In fact, the majority of who I have imagined myself to be throughout my life, has turned out to be things I am either not at all talented in, or dislike doing altogether. It leaves me unsure of who I am, or what I would like at all.

Four years ago I took a course in Residential Construction (a foundation course for carpentry apprenticeships.) I did really well in the theory side of the work, and well enough on the practical, that I completed the course top of my class (94% average in a class where nearly half of my classmates failed.) Because my entire immediate family (mom, dad, brothers) were really skilled in this area, I could very much imagine that I would be good in it as well. However, despite my high marks, I was not at all equipped to work in that environment. Under such stress, pressure, and exhausting work, my functioning level dropped to the point where I couldn’t do the work at all.

Had I done well, I would have been at Journeyman level at this point in my life, which I imagine would be a decent place to be.

It is the same with parenting. Throughout my childhood, while I couldn’t relate to any of the children around me, I did love children, and babies, and… I could imagine myself as a great parent with a lot of children. I loved dolls. I wanted children. I even took a 2 years Early Childhood Education course at college and graduated with Dean’s Honours.

I ran a daycare. I home schooled my son. I took and passed an adoption home study, and had three high needs children placed with me for adoption. And… I failed.

The truth was, I could imagine myself as a great parent, but most of the time I was overwhelmed. I could not relate to other parents. I could not relate to the social needs. I was overwhelmed by the behaviours. I was not relaxed. I was not calm. I didn’t even like the world enough to feel confident sending my children out into it.

My concern now is in knowing that my imagination is capable of seeing myself successful and enjoying many different things in life that in reality would not be good for me at all, how could I possibly decide what would truly be good for me?

I thought I could be a good chess player, but I am not. So who am I then?

ResCon

 

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Autism: My Sharp Cat

My son and I spent most of the morning, and part of the afternoon trying to cut Finn’s nails. They have to be done – but we have had no luck in convincing her of that.

I got Finn 5 years and 5 days ago. She was brought home to fill a hole left in my life after my 16 year old cat, Chiku, died. Finn was advertised `free to good home` on Craigslist. My husband and I went to pick her up at night, at the house with the wagon wheel out front. It wasn’t difficult to find.

She lived with a couple that seemed really nice. They had had her since she was a kitten, and at that point she was 5 or 6 years old. The couple was getting transferred out of town for work, and they bought into a strata with a huge book (52 pages, I think they said) of rules. They had already bought the place when they found that pets weren’t allowed, and so they had to give her up.

The couple lived in a nice home with nice leather furniture. Within that home, Finn (called Muffin at the time) was allowed to sit on one specific chair, and no other furniture. She had a large plush blanket with a picture of a horse on it, which she had claimed shortly after arriving in their home. The horse blanket came with her.

When we brought her home, Finn was understandably nervous. Upon getting her out of her crate, she ran down the hallway to one of our bedrooms, and hid inside. I brought her horse blanket, crate, food, water, and litter box into the room for her while she settled. It was a year before she came out of that room, which ever since has been known as `Finn’s Room.` An entire year!

Finn

During that year, my son and I would try to visit Finn in her room. For a while I had my computer in there, and Finn would tolerate me sitting at my computer, while she sat on `her` bed. If I got too close, or tried to pet her, she was really fast, and would lash out. She was kind of like a shark – sharp, dangerous, unpredictable… Siamese.

It took me by surprise the first several times she actually ventured out of that room. She decided it was time to come and visit, and would walk down the hallway to the kitchen to visit while we were in making or getting supper. It was not only surprising, but also quite scary, for she would still lash out if we got too close – though she would permit, and actually encourage, several seconds of petting.

Shortly after our second anniversary with her, she started to visit more, and even spent some time outside on our back deck that summer. She would weave between our legs while we were in the kitchen, purring all the while – but we still had to watch closely, or she would swat at or bite our feet if we were there a moment too long (or she got slightly too excited.)

By the third year she was coming out into the living room, and at three and a half years I brought `her` chair into the living room, where she relocated herself. I am glad that she moved with her chair, though it wasn’t quite expected – she had a bed in the room, and I was bringing the chair out to have more places for people to sit when they visited; but this way Finn spends way more time with us, and that has to be a good thing.

Five years later, I can quietly sit by Finn and pet her for a short time without her attacking me. She loves to get attention, and will loudly purr while I am playing with her, or petting her. I still have to watch very closely as in a moment she will go from purring to swatting – and she is very quick, and very sharp.

Only since I haven’t been able to get close to her enough to cut her nails (or even get her into a crate to take her to the vet) her nails are now very sharp. So sharp that she has been cutting herself scratching her belly, and her neck, and her eye… so somehow, I have to cut her nails.

I am guessing we will have to invest in full body armour to succeed at this task… hawking gloves perhaps?

My son and I spent most of our morning trying to cut her nails. I got one cut, and the very tip of another. Obviously we weren’t too successful. I wish I could make her understand that we are trying to do this to protect her from herself – but that might take another 5 years.

 
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Posted by on March 22, 2017 in Experiences of an Autistic

 

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Autism: Handy Dart

It had been so many months since I sent in the paperwork, that I just assumed I didn’t qualify. “They could have at least written back and let me know,” I thought; and then I forgot about it. Well… not quite forgot, just sort of let it go. So I don’t qualify. I didn’t really expect to anyway. After all, I am not that bad.

For months I stopped talking about it. There was nothing to say. Only that morning I had been talking to my son, and questioning why people don’t respond even just to say, “sorry, we can’t help you.” Just to get some sort of closure. I wasn’t expecting anything much out of the conversation. I had been sick, and still wasn’t thinking well. It is like illness puts a fog on my brain that doesn’t let up for a long time once it is over – and I was still in that fog.

I hadn’t talked to my son for a while, because I had been very sick – so had my husband – and he didn’t want to get sick, too. So he stayed downstairs, and I slept upstairs for a lot of days. I still wasn’t thinking well, but I was getting better, and it was really nice to spend time talking with my son (even though I hardly knew what was being said.)

When he went back downstairs, I checked my email, and had received a message from my therapist letting me know about cheap swim times at the community centre. Knowing that I am not close enough to town to either walk or get a bus (no buses come anywhere close to my house – I would have to walk near an hour to town to catch one) and that my husband takes our only vehicle to work (besides, though I can drive, my anxiety around driving usually keeps me home anyway – especially when I would have to drive to town and back three times in a day to get my husband to and from work, and go do my thing in the middle of the afternoon.)

I am pretty isolated here, though truly we are not that far from town – just 7 minutes driving – but it is 7 minutes of twisty, turny, hilly terrain, which I am not well able to walk.

So months ago, trying to encourage me to get out of the house sometimes, my therapist suggested the “Handy Dart” bus service. It is a service for disabled people who couldn’t manage to catch a regular bus, or get to appointments and such in other ways. For $0.25 more than the regular bus service, this one will pick you up at your home and take you right where you need to go. Then they will pick you up when you are done, and take you home again. Sort of like a cab, only you have to phone and set it up 3 days in advance, including letting them know if anyone else is coming with you (for an extra ticket) and it is a bus, so shared.

Considering it would cost about $20 to get from my house to town in a cab (that is just one way) this is a great deal! Only it is reserved for highly disabled people: cognitive, physical, and sensory.

I am isolated, and I do have severe anxiety. I do get bad motion sickness, especially on buses. I do have bad sensory issues (only I am not sure how the Handy Dart can help with that since there would be other people on the bus, and sometimes other people smell.) At the same time, if there were bus service in my area, I could take the bus (not pleasant, and very anxiety provoking, but I could do it.) If I had another vehicle, I could drive to town. And if I lived closer to town, I could walk or ride my bike to get where I needed. Only none of those options are available to me. So months ago, I filled out the forms for the Handy Dart. My therapist filled out her portion, and my husband brought it in.

Then… nothing. Nothing for months. Of course I didn’t qualify. I am not that disabled.

But my therapist suggested I contact them, and “see if I might qualify.” So I emailed them, because… phones. Less than 5 minutes later, I got a phone call back, “Sorry, I am not sure how this got overlooked. The boxes are all checked, and you are good to go.”

So I did qualify. Right away. No question that I am not disabled enough. Obvious to them that I need this service. So obvious. And I cried in response.

From the moment I first went to my doctor for an Autism diagnosis, I have received nothing from them except the fact that every step of the way it is so obvious to them that I am highly disabled.

  • Yes, you have autism… and OCD, and PTSD, and severe anxiety, and depression, and…
  • Yes, you are struggling too much to be working.
  • Yes, we will put you on medical leave.
  • Yes, you qualify for long term disability, though 60% of applications are rejected.
  • Yes, you qualify for Community Living services, reserved for highly disabled individuals.
  • Yes, you qualify for the Handy Dart service.

I should be thankful, and I am! It is just that… for nearly 40 years I fought so hard to be ‘normal’ and to ‘fit in.’ People never accepted that I belonged, though they were mostly too polite to tell me to go away, yet they always judged me as if… as if I could work hard enough to fit in, and just wasn’t making enough of an effort. And I believed them.

For nearly 40 years I fought, and failed, to be seen as normal, typical, capable… and now at every turn they respond as if to say, “Of course you have Autism.” “Of course you need these services reserved for the most disabled people.” “Of course you couldn’t succeed in that world.”

And I think, “so why did you make me feel for so long that these failures were all my fault?” “Why didn’t you tell me that I wasn’t able to be like you no matter how hard I tried?” “If it is so easy to see, why was I expected to be like everyone else?”

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” – Albert Einstein

That is me. I have spent my whole life believing that I was a failure; that I was stupid; because they tested me in ways that I never could have succeeded. And now I find that this was so obvious to them that there was never a question that I was ‘typical,’ or even could be. So why didn’t they tell me?

And why do I still think that if I fight myself hard enough, I should be able to do what they expected?

90's and earlier 008

 

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Autism: Lost Week

I think the week was good. I mean, I remember that I had gone out to the show a couple of times with my husband, and that we really enjoyed what we had watched. From that moment until now, however, everything has become fuzzy.

It came on all of a sudden and unexpected. I was cleaning my dishwasher – on a Thursday even though it is not my cleaning day – when I started to cough. It came from my lungs, and from the beginning I struggled to get through more than a few seconds without coughing. Due to the sudden onset, and how it just wouldn’t let up, I assumed that it was caused by the disinfectant I had used in the dishwasher. It made sense. It was pretty powerful, and those things often leave me coughing – only not so long.

When my husband came home, he was coughing, too. He said he first noticed it around 3pm (mine was sometime between 2-2:30pm.) It came from his lungs, and wouldn’t let up for more than a few seconds at a time right from the beginning.

Strange.

Even so we went out that night as planned. We went to see the dress rehearsal of “Stereotype High” at our local theatre. All evening long we were coughing every few minutes – but we couldn’t be sick. I mean, colds don’t start full on like that. They just don’t. So despite the coincidence that my husband and I began coughing at nearly the same time, and even though we were at separate parts of town when it began, we thought it was environmental rather than a virus. After all, aside from the cough, we didn’t feel sick.

I must say, I really enjoyed the play! Even though it was a comedy, and typically I don’t at all like comedies (the jokes, rather than making me laugh, often leave me feeling nauseous) I really liked this one. It was funny – like “Corner Gas” funny! I laughed a lot (and coughed a lot) and didn’t feel sick about it.

The next morning I felt sick, though. Very sick. So I emailed my friend who was supposed to come for a visit to warn her against coming, and then I fell asleep. Normally I don’t nap, but on that day I was so tired I couldn’t keep my eyes open.

My husband came home from work early, and went straight to bed. From Friday afternoon until early Monday morning, we barely woke up to acknowledge another day passing. I fed my girls, and took them outside, and went to bed. Over and over.

All over achy, feverish, chilled, burning eyes, bad cough, no appetite… sick! So very sick.

And then only thought I remember having that entire weekend – despite the fact that my dog was scheduled to be spayed out of town that Monday – was a reminder of Stephen King’s “The Stand.” In the beginning, a few people went into public places with a cough, and pretty soon the whole world was dying. That weekend I was pretty sure I was dying (and if that were true, we likely spread it to a theatre full of people, which would quickly spread to the entire world) and I was pretty sure I didn’t care.

Well, here I am 8 days later, and it is the first time in 8 days that I can form enough of a thought to write my blog post. It is the first time in over a week that I have been able to keep my eyes open. And as my dog sits healing from her surgery on my lap, I wonder how we even got through that day.

I guess I really was sick after all. Sorry theatre people!

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