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Category Archives: Autism: Child and Teen Years

Autism: What Could I Be?

It was early in the visit, I think, and it took me a long time to try to figure out which words I should use. The words are always important, for I have found that if I choose wrong, or say it in the wrong way, or… people seem to think I am attacking them.

Not that my mom responds in that way, but enough people do that it has become a major concern every time I want to ask or say anything of any importance to me.

Was I good at anything as a child?

What was I good at when I was young?

Was there ever anything I was especially good at?

Who was I as a child?

Was there anything you thought I could be when I was a child?

Was I always this broken?

If I had the experience, do you think there is anything I could do?

Did you think I had potential to be anything when I was young? Or something? Or more than this?

Did you see anything I might have missed?

I don’t even know how it came out when I did ask her, for all the time I spent thinking about it. I do know that I was really anxious, and my heart was pounding, and my mind was trying to build walls and block things out, and my hands were shaking.

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I do know it wasn’t easy for me to ask. What if she thought I thought that she didn’t do enough to encourage me when I was young? That certainly wasn’t what I was trying to express. I just… wanted to know if there was maybe something I had missed.

Something I could be. Something I could do. Anything I might be able to succeed at – for this string of failures that has been my life since at least my teens (though the feeling was there long before that) has devastated my confidence until I am blinded in fear from trying again.

I was glad to have my mom there. For years sometimes, between visits, she is not there – and some things are hard to ask on the phone, or even in emails. This was one of them.

Was there anything I was especially interested in?

“Writing,” she said. “You were always writing.”

“You never wanted to play sports, or work in teams, or do things with other people. You just always had paper and pens, and I don’t even know what you were writing most of the time. You just loved to write.”

Well… there you have it. What I am, I’ve always been. There is nothing I love to do more than write.

 

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Autism: Shouldn’t Have Gone

After several months of exhaustion, I finally had some energy. Every day I got more done, and felt better about the way my life was going. And then…

It rained.

It rained for days, and I felt myself growing more and more hopeless and tired. Try as I might, I could not bring myself past the depression, or regain the hope I had so recently held. For rain? I wondered. And likely that was a lot of it. Certainly it was all I could think of. Until…

I went to life group (Bible Study) and was reminded of what we had talked about in church last week. I guess I had blocked it out. I used to be pretty good at that – or so I thought. I spent years dealing with that very issue. I should have been past it already! At least I thought I was mostly past it.

Sure, there were moments when the memories overwhelmed me, but it isn’t like I think about it all the time. It isn’t like it affects me all the time. I mean, lots of woman have gone through it, right? But most women still live okay. Isn’t the statistic like 1 in 5, or 1 in 3 even? If so many people have experienced it, why should it cause me so much pain?

I dealt with it for years. Most people close to me know about it, it isn’t like I am carrying this big secret alone or anything. Plus I have my faith. So many people don’t even have that.

Forgiveness has been given. The man died long ago. I don’t experience that anymore.

Unlike for most of my teens and early twenties, I am able to close my eyes without having to battle against flashbacks most of the time. They only come when I am talking about it, or thinking about it, or… someone asks about it.

Maybe that is why the week has been so hard. They weren’t talking specifically to me, but I still knew this was my history, too. It made me think about it. It made me remember.

But the week wasn’t so bad. Sure, Sunday at church was hard – but the afternoon was nice, and I spent it outside. I forgot, as I replaced my negative thoughts with plans for my garden. Monday, Tuesday, and Wednesday were alright, too. I had energy, and got a lot done in my house. Thursday it rained, and though I forgot the message, as the time for life group grew nearer, I realized I really didn’t want to go.

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Only, aside from how chilled I felt due to the rainy day, and how much I would have rather spend the evening with my dogs, under my blanket, watching Netflix – there was no good reason I could find not to go. So I went. And then I remembered, and realized it would have been better for me had I stayed at home.

So Friday was really hard. I was so depressed that nothing at all seemed to have any hope. “What is the point,” I thought. “Nothing I do will make any difference anyway.” It rained and rained. It rained so much that a couple of houses not far out of town were flooded, and destroyed by mudslides. (The people were okay, but maybe the pets weren’t.)

Well, the days were rainy, and the days were hard – and I thought it was all about the weather. But perhaps there was more to it than that.

 

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Autism: Vulnerable

There I sat, on the couch, in another person’s house, with a blanket over my legs. Though it was only a few days before, I had blocked out the message – yet when my husband handed me my study sheet, it all came back to me.

It was going to be a difficult night.

The message? Dinah, daughter of Jacob, had been raped and was being held captive. Her brothers tricked the tribe involved into having all of their men circumcised. “While they were still in pain,” they killed them all, and brought Dinah back home.

Hard biblical stories which aren’t found in the children’s bibles. Difficult messages full of pain.

I remember listening on Sunday thinking, “I can relate to this story, yet… I am not struggling with it now.” And I believed that while I was in church. Then I went home, and my mind was flooded with flashbacks, and pain, and all the ways this history still effects me today.

Years later, it still effects so much of how I live and view the world. Right down to pretty much every thought, every emotion, longing, fear, desire… everything about the men around me.

It makes me vulnerable. It reduces me to the state of the child I was silently begging for someone, anyone to rescue me. A child who learned early on that popular opinion on who is and isn’t a good person was fatally flawed, so she could never believe what other people agreed as truth. A child, struggling to trust anyone to protect her – even God. A child who believed there must be something fundamentally wrong with her to cause her father to use her in that way.

me at 7

Beneath the Autism that made it hard to speak, confusing to be around people, isolating in my ability to fit in, painful in the overwhelming sensory struggles… Beneath the failures throughout my adult life which shattered whatever confidence I once had that things “have to get better.” Beneath the exhaustion which often overwhelms me so I can barely move. Beneath the hurt of a lifetime of people telling me I was doing things wrong. Beneath it all, there is this – and this affects everything.

I walked out of the church, and noticed several women in tears. It didn’t shock me. I was one of them, yet… for the moment I still felt okay. Until I got home and realized I wasn’t. Not at all.

And there I sat with the paper in my hands, and though I was cold, I was filled head to foot with heat that was shame… I guess it was shame. I couldn’t move. My ability to communicate locked up in my head as it constantly did when I was a child. I couldn’t have spoken if I wanted to; I am not sure I did want to.

What would have been the point?

So I heard what was being said, but all I could do was sit there locked inside my body, hating myself. I couldn’t look at any of them. I couldn’t look away from the study sheet – and though there were only a handful of questions, I spent much of that hour reading them over and over again.

I thought I had mostly gotten past it. What I realized anew this week was that it is still very much a part of me, and likely will be until the day I die.

 

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Autism: My Dad

My dad was good at a lot of things. As I was lying in my bed yesterday afternoon, exhausted, and depressed, and overwhelmed by life, I was thinking of that. He was good at a lot of things. I am not really good at anything, and that fed my depression.

My dad was a good son. He was a good brother. He was a good friend. People liked him, and I think he genuinely liked people. He was the first one people often called for help. They would frequently drop in unexpectedly, and he would welcome them in. I remember at least two instances in my childhood where people were really struggling, and my dad invited them to come live with us; and they did.

Frequently my dad took people out for coffee, or just for drives, and he talked to them. My dad was very social, and was very easy to talk to. He was generous, and giving, and caring. He liked helping people. He liked being useful.

My dad liked spending time with people. We spent a lot of my childhood visiting with his friends and family, and camping as a large group with his extended family. He would go fishing with his brother and brother’s kids, and sometimes take us; when he didn’t, he always brought small gifts home with him to show he was thinking of us. He would take us and go to amusement parks with his sisters, our cousins, and his parents. He would take us to the drive in theatre (a lot!) or just rent movies and invite people over to watch at home.

My dad liked spending a lot of time with us. He would take us for walks along the creek, and on picnics, and for drives just to talk. When my dad was home and awake, he was almost always visiting. He even came with my older brother and I to nearly every cadet meet we had. He would bring donuts he got free from Tim Horton’s because, of course, he was friends with all the workers there. Even my fellow cadets (I’d like to say friends, but since I didn’t talk, I guess I wasn’t much of that to them) liked him.

My dad liked to sing. He had a great voice, and when we were on our drives, he would put in a tape and sing along. He would encourage us to sing too, even though my younger brother and I did not have good singing voices; he never criticized us for it. I still love the songs that he used to sing.

My dad was a hard worker. Though he worked in a steel factory, in a physically demanding job (and though he was injured before I could remember, and had a bad leg as a result), and though it was shift work which changed week to week, he never complained about having to go to work. He worked full time, and was the sole income provider for our family for a long time. Even so, when he wasn’t working or sleeping, he was visiting with, and helping people.

My dad was good at woodwork. He finished our basement in the house we moved to when I was four, and put a lot of detail into it. He built us a nice toy box/bench, a corner cabinet, a desk… He kept our homes in good condition. He even whittled animals and things from wood, and they were really nice. He was just good at it.

My dad was good at a lot of things, but the brokenness in him… I guess that is why people didn’t believe me when I did speak – for my father was good at a lot of things, but the deepest seeds of evil he pretty much reserved for me.

My dad was good at a lot of things. I am not really good at anything. Maybe that is why I am depressed. Maybe.

Vacation July 2016 014

 

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Autism: My Maternal Grandmother

When I was about 7, I remember the day that my family was sitting in our car. The car was stopped at the side of the road, and I was thinking of how often we visited with my father’s family – yet we didn’t know my mother’s family at all. Speaking was an extreme rarity for me at the time: I was both too shy, and unable for the most part to form the connections to get the words out. On this day, however, I was able to get my thoughts and my words together to speak in a car full of people.

me at 7

“Why don’t we ever visit your grandma (meaning mom),” I asked my mother.

I don’t remember the words that they spoke, but I do remember how uncomfortable my parents seemed in trying to explain the reason for this. It was many years before I got the real reason, but shortly after this, we began visiting my mother’s family again.

At the time, my maternal grandmother and my mom’s youngest sister, lived in a house below the “mountain” in Hamilton, Ontario. It was a Victorian style house, different from any that I had known. Everyone else I knew lived “on the mountain” (the way Hamiltonians describe the escarpment that splits the city in two) and there were no houses like that up there.

The house had a spiral staircase, and the only bathroom was at the top. It was such fun to slide down those spiral stairs, but the adults in the house felt that wasn’t safe, so we were always stopped.

It was in that house where I also met another aunt and the only cousin on that side that I had at the time. She was a year younger than myself, and I later found out that her mother was 16 when she was born, and my parents were asked to adopt her – but it was decided last minute that was wrong, and my mother’s family were upset with her for considering it (or something like that.) That was the reason that we had so little contact with them until that time.

The differences were set aside, though, and after that, we visited several times a year. We spent part of that Christmas in my maternal grandmother’s house, and I remember that year I was given a very large teddy bear. I named him “Bear.” Bear is gone now, and I don’t remember when he was lost. In fact, it was thoughts on Bear that inspired me to write this post.

Sometime shortly after, my grandmother and aunt moved to an apartment in the same area of town, and there they both stayed until my maternal grandmother died of lung cancer when I was 23.

My grandma liked to have the heat high in her apartment. We were always hot there, and so even when we went at Christmas, we would have the sliding doors to the balcony wide open, and we would spend time out there (without coats even.) She didn’t have toys, but she always had lots of scrap paper and some crayons that we would use to entertain ourselves.

My cousin and I often spent a lot of time in my aunt’s bedroom trying on her clothes. That was quite a lot of fun. Although I was very shy, and not really one to play with other children, my cousin was quite the opposite. She was loud, and bold, and quite pushy. She was also aggressive (she once punched my cabbage patch kid, and threw her across the room – I was horrified) and she swore! The kids I knew didn’t do that in those days.

Often the television would be on at my grandma’s house. She watched soap operas, and I never remember her talking about anything else. It always seemed strange to me that her conversations were always about fake people from the TV. Above that, I wasn’t allowed to watch soap operas. My mom told me they would poison my mind, and to this day I can’t watch them.

My grandma rarely left the house, and never went on vacation. Very different from my father’s family, who were always going places, and visiting, and traveling, and social. She sat in her living room, and would cook for us at Christmas (and the turkey was always pink, but her potatoes and gravy were the best!) She would watch her shows, and speak only of these, and when she died the only people at her funeral were her six children, three children in law (my mothers other three siblings were hermits… quite odd, and likely autistic as well) six of her eight grandchildren, and one neighbour that had lost touch with her years ago when she moved from the Victorian house.

Sixteen people at her funeral. Sixteen. It made me feel really sad. But that was my grandma. She kept her life private, and didn’t let people in. She wasn’t Autistic (or I don’t believe she was) but I can see where it came from. She was strange, and she was quiet, and she didn’t have any friends – but I loved her, and am glad that my family were able to put aside their differences so that I could know them.

 

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Autism: Amazing Day!

What an amazingly wonderful morning I have had!

Okay, I don’t write posts like this very often, but every once in a while what I do matches up with who I am, and this is what it feels like!

It is September. I love September! I have mentioned that in the past, and I will say it again. This is my favourite time of the year… yet… is it dissatisfaction to say I always wish I were still a child starting school at this time of the year? I don’t mean kind of wish I was a child, or kind of wish I were starting school – but really, truly.

me at 7

Though I look it, and try hard to speak it, and try so hard to fit into the world that way, I don’t really feel like an adult. I don’t mean I wish to go back to my childhood – no way! That would be horrible. And I imagine that many children struggle, and childhood isn’t always what we idealize it as. Childhood can be hard! I can attest to that.

Children, however, are so full of potential. They haven’t failed yet. They could grow and learn and do and be anything. It is as we grow that the world folds in on us, and puts us in this little box – and if we spill over the sides, or we don’t quite fit right, or the box tears at the edges, we are told we have failed. And that potential that we are born with is reduced to lies and labels that others place on us, or that we place on ourselves.

  • Liar
  • loser
  • failure
  • broken
  • evil

And the chance to be, or to do, or even to try again is taken from us. And we are compared to others who are better than us. Why do we have to be compared? Why can’t we just learn on our own time, at our own pace? Not failures – just… not masters yet. Yet. Not forever. We can learn. We can grow. Let us out of the box. Give us a chance. I wish I were still a child.

It isn’t even exactly like I would like to be going to school – with its forced learning, on external schedules, and being tested and compared to others in the group. Again, why do we have to compare? Why does it have to be a competition? I am not them. They are not me. Why do we have to learn the same?

But provide the materials – the books, the games, the crafts… let me choose what I want to learn, and when I want to learn it. Their tests won’t tell what I know (only how much I could memorize for a short period of time.) They won’t show what I am interested in, or what makes me happy. They won’t show who I am. Don’t put me in a box – let me grow. Let me soar!

Today is Monday, September 5th, 2016. It is Labour Day in Canada. A holiday, and the day before school starts for the kids. But who says I can’t learn and grow on a holiday? It is September, and I was eager to learn. So I took out my books this morning, and began. Though I tried to plan, this morning I didn’t go with the plan. Instead, I took out one book, which led to another activity, and another.

As I write this, it is just after 12pm. I took my dog out, and fed her breakfast. I had a nutritional shake for breakfast, plus some tea and a homemade larabar later on. I went outside, and pruned our huge maple tree so that it wasn’t hanging low over the road.

In between all of that, I took out the materials I already had at home, and learned. And this is what I did:

  • Christian Devotional (“Lord, I Want to Know You” by Kay Arthur)
  • Calligraphy
  • Latin (Latina Christiana – or Latin for Christians)
  • Grammar (Harvey’s Elementary Grammar)
  • Reading music for my keyboard (Music in Me – Level 3)
  • Spanish (Duolingo)
  • Writing (this is my third blog post this morning.)
  • Dreaming (this should be a subject.)

Even with all of that, I had time to:

  • think (so many ideas went through my head this morning. I love that!)
  • laugh at my dog, and take her outside a few times
  • listen to classical music and nature sounds
  • check my email
  • read through Facebook

And after all of that, I still want to:

  • ride my exercise bike
  • go swimming
  • go for a walk
  • do a craft or other activity

Not that I will. The pool is closed today, and it is raining outside. Still I want to. That means that what I have done so far doesn’t feel overwhelming to me. In fact, I feel so good, I could do more. I could even, maybe, visit with someone! Amazing!

If I were a child, this would be enough. Since I am on disability, and only because I am on disability, I can do these things that are so healthy for my mental and emotional state. But why, I ask, is this way to spend my time not valued so much as if I were, say, out in a factory making buttons? Or going to school, and getting a degree? Or standing in a store selling…? Only because I am not paid for it. But who determines the value of what people do anyway?

So many things that people do for money are just pointless activities creating things just to make money. Where is the value in that? I can’t live like that. For me, learning… learning is life, and what I am doing here is of more value than anything that I could do out there. And that is why I wish I were a child. And this is who I am. And that is what made this morning so amazing!

 

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Autism: A Job Like That

The button pusher in Lost. I could do a job like that. I would be so good at it!

4-8-15-16-23-42

Every 108 minutes, type those numbers into the computer, and press “Enter.” Save the world.

I would love a job like that!

Because 4+8+15+16+23+42 = 108, so press the button every 108 minutes. Perfect! Got it! I could so do that job!

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I would love to live in a place like the hatch. Okay, I like nature, and I like being outside… but as long as it feels like outside, I could live with that.

  • Bright lighting.
  • Healthy, living plants.
  • My dog and cats.
  • Some fish in a tank.
  • A pretty wall mural – or a screen with nature scenes and sounds.
  • Nice smelling candles.
  • A camper style dining set with a realistic outdoors picture on the other side (maybe one that changes at different times of the day, or different seasons) and appropriate lighting.
  • An exercise bike and re-bounder.
  • Music – a machine that will play mostly classical music, or instrumental Celtic, and sometimes other things.
  • A large, built in bed, with bookshelves on the end, and maybe another window with outdoorsy pictures and good lighting (maybe on a dimmer switch, so I could change it for the time of day.)
  • Things to learn, like school type books and games.
  • Things to do, like crafts, and cards and things.
  • A huge pantry filled with foods that I could eat, like jars of canned fruits and vegetables, dried grains and things. (But no Kraft dinner, mushrooms, or gross foods like that.)
  • Maybe a circular type hallway for walking – filled with cedar shavings, and indoor trees, and a bench with a raised flower garden to sit in. It wouldn’t have to be big – just nice.

And my job would be to save the world. Every 108 minutes, press the numbers into the computer, and press enter. 4-8-15-16-23-42.

I could live like that forever. So cozy. So safe. Even if it wasn’t safe, it would feel safe, and I would love that. I wouldn’t have to go out. I wouldn’t have to visit. I couldn’t leave – but I wouldn’t feel trapped. It would be so, so beautiful!

Why can’t I find a job like that?

 

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