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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?

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Autism: Becoming a Hermit

I hate to leave home. Even when I go camping, I wish I was able to teleport to get there and back so that I could have my own kitchen, and bathroom, and be able to enjoy what I love about camping without having to truly leave home. Or perhaps I would appreciate making my home on a property that would also work for camping.

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I prefer shopping online, and learning online, pretty much doing everything from the comfort of my own home. I suppose that is why the idea of virtual reality appeals so much to me, for I still want the experiences, it is just… I don’t want to leave home to have them.

My first, and longest lasting job was running a daycare from my home. I appreciated that the work was brought to me, and felt terrified of any thought that I might ever have to work away from home.

This wasn’t always the case, however.

As a child, school gave me extreme anxiety – but ‘home’ was worse; especially when my dad was there. So I went to school (and wished I was invisible.) When school was out, I spent a lot of time exploring parks, forests, and waterfalls with my older brother.

I loved camping, and going for walks, and picnics, and visits with family. Amusements were, and continue to be (though I now live nowhere close to them) my favourite places to go, despite the crowds and noise.

When I was in cadets, that was where I wanted to be, and those were the people I wanted to be with. Anxious? Extremely. Yet I still preferred being there to being at home.

Even during my teen years, though I really struggled with school, and often ‘chose’ not to go (really, I couldn’t make myself some days, and some seasons) I still preferred to be on the school grounds, visiting with my friends, or even sitting alone, to being at home.

It is true that for all of those years, eating, and especially bathrooms were a huge issue for me – but then, they were at home as well. There really was no safe place for such things for me. Such issues only became worse with time.

I finished high school through correspondence, which was a much better option for me, but I still wanted to be at the school when I did the work – just not in the classroom, and sometimes not even in the building.

When my son was born, and we were still living with his birth father, I would walk for six hours a day, every day just to get out of the house. I suppose the reason for that was more that my son’s father was on a different schedule than us, and wanted us to be quiet while he slept during the day – an impossible thing with an infant at home. Still, I enjoyed that time out walking with my son.

Shortly after my son turned one, I started babysitting my six month old cousin. Suddenly it was too hard to get out of the house, and we spent most of our time at home – and I felt trapped. That only lasted through the summer, and after that I took my son to playgroup, playgrounds, children’s museums… anything to get out for parts of the day.

I think it was my first attempt at college (for which I did really well – though again was extremely anxious) that being home all the time became most appealing to me. I was in my early 20’s at the time, and shortly after graduating, I opened my home daycare.

In the years since, I have become more and more of a hermit – or perhaps I just became too exhausted with the anxiety and judgment, and failure, and… that happened whenever I left the house.

Though I do go to church, and I have gone to college again, and I have had jobs away from home, it has never become any easier. The older I get, the more my entire being screams to be home whenever I go away, and I guess that over time I have just become too exhausted to keep fighting it.

After all, I like being home.

 

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Autism: On The Defensive

“There aren’t enough jobs for everyone who wants one anyway,” I think to myself in defense. “Some people are always going to be out of work; especially in this economy. So why should I push myself to do something that would be really bad for me, and lead to another failure.”

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The thing is, I do get so defensive when I feel pressured to work. Yet people always seem to judge and pressure people in one way or another. Why do we do that? As if our opinion, and our preferences (or how we chose to push ourselves) is all that matters – and who that person is, and what is best for them, means nothing at all.

I know that people do this, yet it still consumes my thoughts, overwhelms me, and fills me with anxiety and self hatred when it is directed at me; it always has – even when I was working, and especially as I was raising my children; for parents get the worst pressure put on them to conform to other peoples opinions.

  • I should want to work; what is wrong with me?
  • I should push myself to work; I must be lazy.
  • I shouldn’t want to be home all the time; it is wrong to be isolated.
  • I shouldn’t be living off public support; I must be selfish.
  • I should just live with the overwhelming anxiety, depression, irritation, exhaustion, burn-out… that comes from working – like everyone else does, right?
  • If I can’t work, I have no value.
  • If I have no value, I don’t deserve… anything.
  • If I can’t meet their expectations, they would be better off if I didn’t exist.
  • No wonder they hate me.
  • If they hate me, I must be no good.
  • Since I can’t be good, I hate me, too.

And you see how quickly the pressure for me to do what they think is right leads to depression and suicidal thoughts?

Because no matter how hard I try; no matter how hard I have always tried; I am always a failure in their opinion – and no matter how defensive I become towards their opinion, somehow I always end up believing they are right, and I am broken, and I blame myself for that brokenness, for they seem to be of the opinion that if I tried harder, I would be okay.

Yet it is for these very reasons that I was approved for disability. It isn’t as if I woke up one day thinking, “I don’t feel like working anymore. I think I will live off public assistance,” and then somehow convinced those in ‘power’ that a person who was able to function well, but didn’t feel like it, deserved that money. It just doesn’t work like that!

It was out of the brokenness that they found me, and realized that (when 60% of applications are denied for this type of disability payment) that my barriers to employment were so extensive that it was unlikely I would be able to work for a very long time, if ever again.

And still I know that if I ever find myself healed, and healthy, one of the first things I would do would be to go looking for work. I don’t need the opinion, disgust, judgment, or pressure from others to take me there. If I am well, I will find work. If I am not, pressuring me to do what I am not ready for will only break me further.

 

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Autism: Just Get it Over With!

While for the most part I hate surprises, and don’t do well with change, there are times in my life where I just wish they would get it over with!

Like when I was working, and asked for morning shifts though it meant getting up at 5:30am despite my insomnia the night before, and my need for more sleep. The reason for that was that when I was on morning shift, I would get up (after medicating myself to sleep) go to work, and then come home and be able to relax to some degree. When I was on the afternoon shift, I would wake up anxious, and that anxiety would grow until my 3pm shift began (and then build through my shift but that was the same either way) and all I could do before my shift was pace and worry.

Change hits me in much the same way.

For instance, this week I was told that my dog’s mother would be brought to us sometime during the week (we agreed/decided to adopt her, too.) All week I have been too anxious to get anything done, and so I paced, and tried to watch Netflix (though was too distracted to pay much attention) and played Facebook games… so much of my routine became impossible just because of this (good) transition that was coming up in my future.

I was asked if I was ready for her one Friday, and was later told she would be brought the following Friday. That proved to be too much time for me to be anticipating what was coming. It might have been better for them to contact me on the Thursday evening, and bring her the Friday late morning… but that is not how it worked out.

I suppose that the tendency in dealing with people who don’t handle change well is to give them a lot of time to get used to the idea… and sometimes I need that. But for these sort of things: adopting a dog, going to work, having an interview… it might just be best to let me know, and get it over with – for the anxiety will be there, and time will only give it room to grow.

And then, after a very unproductive week due to the anxiety, I wasn’t told what time on Friday things would be happening. So I waited – email open, phone lines free, watching out the window – the entire day! And every moment my anxiety grew. It grew, and grew, and upset my dog because I couldn’t find calm and she didn’t understand.

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It was nearly 5pm when I found that they couldn’t make it, and would be coming Sunday instead. Nearly 5pm! And I was panicking! However, at that email I calmed down slightly… I can understand that sometimes things don’t work out as planned… and decided that Sunday would be better for me, too.

Yet one entire week, and one really bad day, might have been saved if I was told shortly before and could just get it over with.

By the way, I am happy she is coming, I just don’t do waiting well, for my anxiety like an avalanche grows and grows and doesn’t stop until whatever caused it is over.

 

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Autism: Dirty Lazy Slob

It isn’t just him. In fact, there is only one person in the world that this doesn’t happen with, and that is my son. The thing is, though, that since we have been married for 13 years, I would have hoped this would have worn off by now… but it hasn’t. Obviously, it hasn’t.

I suppose the only way for me to be fully comfortable with a person is for me to have them constantly in my life from their infancy. There seems to be no other way around it. Had he gone to school, I am most certain I wouldn’t have been comfortable with my son, either.

I knew that from the time I was young, and that is the reason I wanted children so bad: because I couldn’t get close enough, or feel safe enough with people any other way. Only to reach that point in a relationship takes a lot of years, and likely too much attention on my part – and not enough socializing for them, I guess. Likely not a great situation for most children, though my son would not have accepted things any other way (I suppose because he is Autistic as well, and refused school and other places where he was away from home, with many other children, or otherwise uncomfortable.)

When I first left home, I lived with room mates – a friend, and my son’s father to be exact. Since none of us worked or went to school during that time, we were pretty much always together. Of course, that meant shared housework, and for my part, I couldn’t… I just couldn’t. They believed I was… “dirty” was the word they used, only we all knew I didn’t like the mess, and was very particular about cleanliness… “lazy,”is the other word and they likely believed it; and I believed them.

For years I believed this about myself; that I was a dirty, lazy, slob. The thing was that I hated the mess, the clutter, the things left undone. I HATED it! But rather than be able to clean due to that hatred, the environment drained me; so then I felt lazy, which reinforced what they were telling me.

And then I lived on my own, and suddenly for the most part, my home was clean; and I was the one cleaning it! Yes I was tired, and yes sometimes things were untidy (by that point I had a 1 year old to care for) but things were getting done… until depression hit, that was. I just couldn’t overcome the exhaustion of depression to keep up with more than caring for my son. The housework was just too much. Once again they labeled me: “Lazy,” “doesn’t care,” “dirty.”

Yet still I hated the mess, I just couldn’t overcome it. Once more, the environment drained me. Yet their labels stuck in my head, and though I fought them, I still believed them.

Until I overcome the depression (which returns in cycles that can last anywhere from a few weeks to a couple of years depending on the situation that set it off) and once more my house was clean, and I was cleaning it… all by myself.

For years I ran a daycare, and had my foster children, and my house was clean… but the thing was that when adults were around (or even older children and teens) I still couldn’t clean. I couldn’t cook, I couldn’t tidy, I could hardly move.

Though it has been 23 years since I first left home, I now know that if I were in that situation again – the one where people were around me all the time, and I was required to clean and do my part with them there, I still couldn’t do it. The labels would be repeated, and the people would believe them, and what is more, I would believe them… almost.

But the truth is I am not lazy (though my energy is extremely low, and I get overwhelmed easy) I am not dirty, and I do care very much! The more fitting description is that I become paralyzed, and unable to function with anyone over about 4 years old around me – and that is as true with my husband of 13 years as it is with a stranger that comes to help; and there really isn’t anything that can be done about that, for no amount of years, or practice, or immersion into those things has had any effect at all on my ability to function in that situation. So I can only hope that those who matter will understand, and give me the space to get things done.

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Autism: Trip to the Theater

My husband got off work at 4pm so that we could attempt to go see Mary Poppins at the local theater. Except for the “pay what you can” Thursday shows, which don’t have advance ticket sales, they were sold out for all 12 of their showings (including the free dress rehearsal night.)

Easter 2016

He got home angry at 4:30pm because the van wouldn’t start, and he had to get jump-started. Plus he had to wait through two trains. Very unusually, he was upset, and I was still feeling okay. He showered, we ate, and got ready, and were at the theater for 5:20pm.

Although the theater didn’t open to sales until 6pm, we were still numbers 96 and 97 in line (the tickets were numbered, and given in order.) Although we were allowed to stay in the theater at that point, though the show didn’t start for an hour, it was really crowded in there. We ended up waiting in the lobby of the movie theater across the street as it was warm, and nearly empty.

When we went back at 6:30, the lobby was extremely crowded and I was quite overwhelmed. My husband went over to a wall, and I backed into a corner, hiding behind him to block out the people. We were called in to find seats according to our ticket numbers (first 1-20, then 21-40 and so on.) It was miserable waiting, but they got through it quickly. We got our seats in the second row from the front, on the end of the right side (facing the stage) right where I wanted to be.

My words can’t do the play justice. It was… amazing! Magical – truly (tables that broke and went back together. Dishes that seemed like they would fall, but didn’t. Cakes that decorated themselves. Toys that came to life.) It was like a large city, professional production on a small town stage. Fabulous!

Behind us sat one of the actors from another play we saw there: I Had A Job I Liked… Once. That one had a very small cast, and he was one of the two main ones, and it was a highly serious, and very sad play. My husband talked to him at intermission, and I awkwardly said several times how it was one of my favourite plays ever (which it was, but I also loved Little Shop of Horrors, and Man of La Mancha – which was done at the highschool, and I was loving Mary Poppins. There have been so many good ones.)

Then he told us that some people walked out from his play because the sexual assault theme was too much for them. Then the whole play came back to me… I stand by what I said, but… awkward. (By the way, this isn’t a fame thing. He is just a kid from town who was in one play I know of. This was about talking to people. I am as awkward with everyone, including my 17 year old foster son when we see him around town, though he lived with us three years as a child, and was in my daycare for two years as a toddler, and we tried to adopt him.)

People are hard. Crowds make me cringe. Leaving home was stressful. But that play? Wonderful!

 
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Posted by on December 23, 2016 in Autism: Out in Public

 

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Autism: In or Of the World

It isn’t something that bothers me until I share it with other people. “I am watching…” some supernatural movie, or something revolving around magic or something, and the response is… well, it is like I have done something really wrong. Something I should have known was wrong. And it leaves me questioning all that I do.

Summer 2015 011

It isn’t something that bothers me normally… except when it does. There are some movies, shows, or episodes that hit too close to things I believe are real – and they leave me with very real fears, and very real spiritual battles. “I am sorry, Lord,” I cry. “Please keep the evil far from me, and help me to avoid such things in the future.”

But the vampires, and monsters, and zombies that scared me so much as a child? I don’t believe in these. They no longer hold the power over me to leave me trembling in fear. And if I don’t believe in them, and am not afraid of them, why is it that these type of shows are ones that I will binge watch?

I don’t even like evil. In fact, my favourite part of those shows is when what is evil is somehow made good. While other characters don’t trust them, and won’t forget where they came from, I am thankful they are good. What they were is gone, and now… I like them now.

Mostly I think I watch these type of shows because they are so far from reality that I can just watch, and not be so tormented by the evil in them, for the evil isn’t real. I still enjoy the characters, though, and so it is an escape. And I think I learn from these characters who are so… emphatically themselves.

Then there is the magic. I don’t exactly believe such magic is real, or at least available for use, in this world; but I wish it were. Sometimes I really wish it were. As a Christian, I suppose this is a horrible thing to… admit??? wish for??? Both I suppose. Yet I do, and I would be lying if I said otherwise. Though technically I know that I don’t have access to this power (and conveniently forget while wishing for it that such an ability would have an evil side as well) I think that because I feel so very powerless in this word – in my abilities, in my disabilities, in my overwhelming exhaustion – I really do wish that I could make things happen with my mind, because I often cannot with my body.

You see, my thoughts, my imagination, my mind is capable of far more than I could ever do – so while I almost always fail in the practical part, if only I could take it straight from my thoughts, I could accomplish so very much. Plus it would be a lot of fun! And while I know that these things are impossible, while I watch there is hope that says, “maybe.”

Which brings me to ghosts. Do I believe in ghosts? No… yes… I don’t know. While I have never seen a ghost, I have been around death enough to have seen that what was once there no longer is. So my question at each death is: “Where did they go?” It is an overwhelming fixation. Perhaps it is wrong, and sometimes it is scary, and mostly the shows are so fake that they are ridiculous, and still I watch them. Because maybe someday, sometime, someone will stumble upon an answer. Where do the animals go? Where do the children go? Christians go to Heaven – I believe this – but what is life after death for everyone else (My heart breaks for the lost, over and over: Where do they go?) It is an obsession. Wrong? Maybe – but my fixations and obsessions serve the purpose of helping me to think, and helping me to calm, and they are really hard to let go.

I know these things are escapes for me. The pain of the world lies heavy on my heart and mind, and sometimes… often, it becomes too much, and I have to escape. So I do; into worlds and imaginations, and abilities that are beyond what is available in real life. So the question that comes into my heart and mind at the response other people have when I tell them what I have been watching: Am I in the world, or of it, and is my faith therefore in danger? I would answer, “None of these.” In these moments where I am watching these shows, being in the world is too much for me – I certainly don’t want to be of it. What I want… what I truly want, is to go “home,” and the only way to get there is through faith.

Meanwhile I exist in a world that is often way too much for me, and I have to escape. I have to. And I pray that will be understood.

 

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