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Monthly Archives: October 2015

Autism: In a Dark Place

It was a dark, rainy day, and even with the light that I have for my Seasonal Affective Disorder, I couldn’t get moving.

Maybe I am ‘solar powered.’

All day I felt intensely out of place, and too needy and unproductive to have a purpose in this life.

If I were a character in a story, I would expect to be killed off soon, as there seems no reason to keep me here. All characters have a part to play – I wonder what mine is. Only I feel death is a reward that I don’t deserve.

What will it feel like – the end of this life? Of this I have been afraid much of my life. Death I want – sometimes so much it hurts; but dying? Not so much.

I hope that soon I will be shown some purpose for me to remain in this life. It doesn’t have to be work – it is probably better that it isn’t, although I need the income. I just don’t always want to feel like this.

Maybe it isn’t a purpose that I am seeking, though. I think I am overwhelmed today by the renovations that need to be done on this house, and I feel myself shutting down.

Perhaps it is the power to fix or escape from these things that overwhelm me that I want, rather than purpose or death. Wouldn’t it be horrible for my prayer for death to be answered, only to find that what I needed was just to replace the floors, update the kitchen, or move to a new house?

Today I am in a dark place, and it all seems like too much.

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Autism: Changes

Has my age finally caught up to me, or perhaps because I have stopped working, or is it because I learned that I have autism this year? So many of my preferences have seemed to change in the last little while.

I changed out my jeans for corduroy pants – they just feel more comfortable. I have noticed that my hair and scalp feel best if I wait 3-4 days between washes (something other people have told me was true so many times in the past, but I could never hold out long enough to find out.)

My contacts more often sit in their case, as I choose to wear glasses, or no correction at all. I am drinking a lot more tea.

This year, I am struggling to live in the colder temperatures (within my house) that I have always been fine with. A warm sweater is not always enough.

I am finally (I guess it is a good thing) accepting that I like the quiet, and that I am okay with the thought of not being able to have more children.

In acknowledging how quickly I become exhausted and overwhelmed with visits, I am re-evaluating my definition of what friendship is – and how much I really need; maybe my husband, son, and online friends are enough.

No longer am I battling to be “normal,” but instead, am fighting to be allowed to be the person I am (and trying to figure out who that is.)

I think, that since finding out the truth about my autism/Asperger’s, I have been working to cut out those things in my life that do not serve me well. Perhaps I will bring some of them back in when I have finished with this “de-cluttering” but not all. No, some things, I suppose, will be gone for good.

And I think… I think I am okay with the person I am seeing emerge from this mask that I have been wearing for so long.

Maybe one day, when I think of who I am, I won’t turn away in disgust.

 
 

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Autism: Fears, Obsessions, Confusion

If only I had known… the inner workings of my mind and emotions are much more complex than they appear.

The first time this really got me into trouble, I was seventeen years old. The brother of a friend had just died in a tragic accident. He was barely an adult. A 10 year old boy died the same day as a result of the same accident.

What happened was the young man fell off the 22nd floor of an apartment building. The boy looked up to watch him fall, and was struck by a truck – the driver had also looked up, and didn’t see the child.

Events such as these bring our mortality into light, and my friends and I were no exception.

The challenge was that I was struggling through a severe case of Post Traumatic Stress Disorder at the time. When I say severe, I mean it; I couldn’t close my eyes without having flashbacks to the abused child I was. I was running away from people and places constantly – often with little or no warning. I was hiding under tables, under beds…

I could walk into a room, and immediately know the best hiding place, all of the exits, and the floor plan of the space I was occupying.

I couldn’t handle school. I had friends, but would only go places if my boyfriend was there.

My boyfriend… he also happened to be my best friend, and I was completely dependent on him that year. It wasn’t fair to him, but I needed him, and he was there.

And then this happened. This event that was so shocking, so close, so real – and then I was lost.

Suddenly our friends were telling me that I was in love with someone else. Frank believed it, too, and it hurt him. I could tell it hurt him, and I didn’t know what to do – for I didn’t believe I was in love with this other boy. I didn’t know what they were seeing, but I didn’t believe it to be true.

However, the more they said it, the more focused I became – which confirmed their belief.

I started looking at this other boy constantly, and became obsessed with thoughts of him. I began dreaming of him, and it worried me. I didn’t question that in my dreams I was with John – yes – but I was traveling the world in search of Frank. It didn’t cross my mind that this was my fear, not my desire – for others told me this was true, and I believed them.

Suddenly I was in the arms of this other person – and I didn’t belong there. I missed my friend. I felt lost and alone… but I wouldn’t return to the one who still loved me, for I hurt him. I hurt him, and I didn’t know why, and I didn’t know how to stop myself from hurting him again – so I stayed where I was.

I was afraid – so afraid… and to others it looked like desire. They were so sure they knew what I wanted that I believed it myself, and I stayed. Like a little child lost in the woods is told to stay where they are so others can find them… I stayed. What else should I have done?

From that relationship came my son. I won’t say I didn’t love his father – but I didn’t understand how I came to be with him, and I didn’t belong there.

That was the first time, and I didn’t understand that my biggest fears present themselves as desires to others; so much so that the others have no question that they know what is best for me – and yet, they are so wrong. So often wrong.

The next time was when my cousin was sick. I loved my cousin. Yet when I knew she was dying, I dreamed of her death. I wanted it to be over… but no, I didn’t.

I was afraid of what was coming, and wanted that fear to go away, but I didn’t want her to die. I know I didn’t want her to die – and after…

But it looked like this was something I wanted. I was so focused, so matter of fact about it. I spoke of her like she was already gone, like there was no hope. I maybe even smiled – but inside I was breaking, even as I ached for it to be over.

Maybe it is better how others do it – they hurt, they grieve, they move on. I obsessed. I responded poorly. I was locked in depression for 2 years after. I have never really overcome that experience.

It was after Wendy died that I understood what happened with Frank. It wasn’t something I wanted. I was afraid – and I believe them when they told me I wanted that change. They were wrong, but I didn’t trust myself. I didn’t understand what I was thinking or feeling.

I wouldn’t go back and change that, for from that came my son – but I lost my best friend in the process, and 20 years later, that still hurts.

I know there have been many times over the years where my fears and obsessions have confused others – confused them to the point where they are absolutely convinced that they know what I want more than I do, and they are always wrong.

Did I want my children taken from me? NO!!! – but they would have said yes. Not yes that I wanted them gone, but yes that it was better for me – because in my fear, I was terrified they would be taken, which made me look guilty.

Because as I tried to express to them my need for understanding, what they heard was that I found it to difficult to raise my children – but that was not the truth. The truth was, I was mostly fine with my children, but found it difficult to deal with other people.

Even now, I find it hard to distinguish between what I want, and what I am afraid of; who I am, and who others expect me to be; how I feel about something, and how others tell me I feel about it.

It is all very confusing, and often stressful to me – especially when I have an obsession over a fear, that appears as a desire that would hurt someone I love. I want to shout that is not true! But they wouldn’t believe me anyway.

I am chipping away, chipping away, at who they have told me I am – but I don’t think I will be done anytime soon. Somewhere along the way I got lost in their expectations, and in their confidence over who I was… who I wasn’t – and I still don’t know who I am.

 
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Posted by on October 29, 2015 in Autism: Reality

 

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Autism: Outside of My Comfort Zone

“We need to work to get you outside of your comfort zone,” she tells me. Doesn’t she know that all things are outside of my comfort zone? Over the years I have said this to people, and they all laugh… it is no joke.

I get up out of bed, and I worry about the day. My skin itches – I cannot put on enough lotion to overcome the drying effects of the air. The world is blurry. I need glasses to correct my vision, but they give me headaches, and make me dizzy. I wear contacts, which irritate my eyes, but are better than glasses.

The food that I eat might taste good, but more often makes me nauseous. After eating, my stomach almost always hurts. If I can stay home, I might be able to work to settle it – but if I have to go out, the anxiety will make it worse.

If things are out of place, a couch or table is ‘askew’, or perhaps some water was spilled on the counter, my skin will crawl. If the floor is wet at all (perhaps a splash from the sink, or a drop from a tea mug) or if it feels dirty (I sweep nearly every day, but there is always something) I am up walking on my toes, and wishing I could hover.

If I put on shoes, my toes hurt. A tag, seam, or twist in an article of clothing will make me squirm – and even tear the clothes apart trying to tear the tag off if I can’t fix it easily. My scalp is almost always irritated.

If the day is dark, I am very tired and irritable. If the sun is bright, I have to squint, and very quickly get a headache. Any noise that I haven’t chosen will become a focus point, and leave me angry. The pressure from wearing noise canceling headphones gives me a headache, and anything set in my ears makes my ears itchy, and gives me an earache.

When I am cold, I tense up, to the point of pain. When I am hot, I struggle to think or breathe.

All day long, no matter where I am, my environment is attacking me. If I am home, I can have some control over it. If I have to go out, I always get overwhelmed. People, crowds, smells, sounds, traffic, detours, construction, open spaces… everything is too, too, too much for me – and that is just the sensory.

I have failed so often to meet other people’s expectations of me that I am always afraid. I am afraid of saying or doing the wrong things, wearing the wrong clothes, being seen, being judged, being hurt. So are other people… I get that. I do. I know that some other people obsess as much as I do about every word they have spoken – or how long they have remained quiet – but not most.

I freeze up at the thought of talking to people. Doing things with them is worse. It can take me days, or even weeks, to bring something up with my husband – who is highly supportive – and even then I shake as I speak.

People tell me it gets easier with time – just push yourself… But I have. For years I pushed myself – to go to school, to run my daycare, to try to adopt, to talk to the specialists, to go to work, to be social… it never got easier. With time, it only ever got harder.

To stay home is hard. To go out is worse. So if I am here, at home, on my computer… cleaning the house, ignoring unwelcome sounds and smells… eating with others, going to church, attending Bible study, writing my story… know that I am doing all I can.

It may not look like normal to you – this life of mine – but when the very act of living and breathing is beyond my comfort zone, please, PLEASE, don’t ask me to do more.

 
 

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Productive Driven Saturdays

Okay, so Mondays I can understand… my husband is off of work, and I get performance anxiety even in front of him – so I end up sitting around most of the day. I have tried to work while he is home, but mostly I can’t.

Tuesdays through Fridays I try. I really do. I am not working, and to me that means that I should be productive at home. So I push myself to vacuum and sweep the floors, clean the bathrooms, clean the kitchen, do the laundry… all the stuff I feel needs to be done every day or two. Every day I accomplish something, but my energy is so low, that I may only clean for 30-45 minutes a day. That is hardly worthy of replacing an 8 hour shift, and I feel bad about it.

It is my medication, however, and until it stabilizes, I guess that I have to work with what I am left with. For the most part that means little to no energy, waking up late, going to bed early, not being productive. It is hard to accept, and I often think the medication is worse than the anxiety and depression it is there to fight, but maybe it will do something if I just push through.

Saturdays, however, get me. I do not understand. All week, if someone would have asked me if I would get so much accomplished in one day, I would have thought it impossible; improbable at the very least.

However, for four weeks straight, in spite of my low energy (which is just as low on Saturdays as it is the rest of the week) I have gotten up in the morning with the drive to organize strong within my mind. So I have breakfast, call up my son to clean the dishes (as that is his job, and I almost always want to start with the kitchen – not that it isn’t clean, but those dishes we don’t use as often get dusty fast, and the food gets piled all over the shelves when it comes into the house, so I always feel it could use more) and start organizing.

Last week it was the front closet, entryway, and broom closet. For both of the Saturdays before, it was the Rec Room, and downstairs hallway. This week it was the linen closet, and one of the spare bedrooms.

I also cleaned the kitchen, swept, vacuumed, and washed the floors, and did a lot of laundry. It was another busy Saturday.

For all four weeks, I didn’t even turn my computer on until around 4pm – and considering I usually have it on by 10am, that is quite an achievement.

I don’t even consider quitting through the day. I don’t know where the drive comes from.

While I can understand why others choose Saturdays to be their cleaning day – they work all week… their children are home to “help”… they have company coming on Sunday… there are a lot of reasons to choose Saturdays as a cleaning day, but none of them are true for me, and I am not choosing to work this way – it just happens.

Perhaps it is because I am not doing so much the rest of the week – only I don’t feel that I have more energy. Maybe it is because my son and I do not walk on Saturdays – only I like walking, and feel that helps me to move and focus. Perhaps it is because I know I won’t do much at all on Sundays and Mondays – that might be, but doesn’t explain the drive I wake up with.

So here ends another highly productive Saturday. My husband will be home in about 7 minutes. I have a peach crisp baking in the oven, and supper just about ready to serve. I have no idea why I can accomplish so much on Saturdays without effort, when the rest of the week I push myself and don’t get near as much done, but I am thankful to have it.

So here’s to productive, driven, focused Saturdays!

 
 

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Inside This Room

The majority of the first three years of my marriage were spent in this room, as well as a large portion of the five years following. It was a place of laughter, happiness, and play. I don’t think it was a favourite room those years so much as the best one suited for its purpose.

We purchased this house for my daycare. The finished basement, with its own access, was as large as the upper level. It was a really good size for the seven children I would have in my home each day. We had a room for stories and naps, a room for eating, crafts, and baking, a laundry room, bathroom, and this – the play room.

I have spent many contented hours in this room, tending to the needs of the children in my care. Later, it was my own foster children who played in this room. I enjoyed those years, and sometimes… sometimes I ache to go back to those days.

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Today the house is quiet. It has been for years. While in my autism, I struggle with noise, I also miss it some days. It was my job. It was my identity, and I was good at it – maybe… I think.

Some days, I think I could go back to that life – although my son now calls the nap room his own. The food room has become a place of storage. The outside stairway to the basement has been overtaken by spiders. Our front yard play area has been given over to our pets. The house is too big for the three of us – but it has been filled with stuff.

I miss having children in my life.

After losing my children, how could I ask parents to trust me to care for theirs? I know that technically they weren’t my children… that is what the ministry says. My therapist says it wasn’t my failure – it is a broken system, and there was no way I could have won. She worked in it for years. She knows.

The ministry even encouraged me to go back to babysitting after they took my kids. How could they say I couldn’t have my three – yet encourage me to take on others?

I never did have the confidence to get my daycare license back after that, but I did babysit for a while. The children were happy. The parents were pleased with the care I gave to their little ones. But as they left one by one – because they were laid off… because they had shift work and got a nanny instead… because they were taking courses online at home and didn’t need me anymore – I did not seek out more.

I moved on to other work, and never got my confidence back in working with the children… but I miss them.

My adult son lives in the basement now. He likes the quiet. He doesn’t like children – they are loud and unpredictable, he says. He doesn’t want me to babysit, and I don’t want him to leave.

It was a dream, but that dream is gone.

I spend a lot of my time in this room, these days. It is very quiet. My dog likes to visit me in here; sometimes my son does as well.

These days the room is full of plants, and books. I spend a lot of my time writing in here. I like to write. The house is too big for me – but I like this room. I would put a wood stove in here. I might change the carpets. I like this room, though; it is a good room for remembering.

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Autism: Who Am I Really?

Today my energy is very low, and I am wondering if my thoughts on gardening, preserving food, and living a more self-sustaining lifestyle are actually practical for me to consider.

My dreams are vast, inspiring, and active – but my life has never followed that pattern. Again I find myself seeking… always seeking, to be someone I am not.

I can do some basic sewing, and can prepare crafts for preschool age children, but I am not the type of person who can just pick up some materials, and make something beautiful. I want to be that person, but it is not who I am. I am a dreamer. I like the pictures, the smells, the decorations… but outside of my own thoughts, I cannot bring these things to reality. I want to be able to, but, that is not who I am.

During the darker months of winter, I find myself designing and dreaming over a vast fruit, herb, and vegetable garden. In the spring, I want to plant. The desire is deep within me. However, once summer hits (along with the heat and horrible allergies) I battle against going outside. My energy is too low, and the grass and heat make it difficult to breathe.

While I can grow some things – sunflowers, pumpkins, tomatoes – I really don’t know what I am doing (or have the energy to keep up) in order to grow much of my food needs for the year. I wish I could. It seems like a worthy goal – but it isn’t who I am.

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Perhaps I could learn to garden, and I think I would like to, but do I have the energy to keep it up? I never have in the past.

When autumn is coming near, and the leaves start to fall, I dream of a pantry full of canned fruits and vegetables that I have preserved from my own garden. I can imagine myself going in to choose my foods throughout the winter, and I feel content within my dream. But canning my own food would mean I would have to spend the time learning how to both garden, and safely preserve the food. While I might be able to learn how through a course taken with others, having to go out to learn among others would be so exhausting, I likely wouldn’t follow through.

At this time, I own three cats and a dog. I am an animal lover – that is not just a dream – but when I ache to own sheep, goats, chickens, llamas… I see myself playing with them. I know intellectually they are a lot of work to care for, and still I long for them.

I have had many rabbits and guinea pigs in the past. Even they were more work than I had energy for. I did love having them – but for me, who has always had such low energy, is it practical to dream of having more?

In my mind, I have such beautiful ambitions, such wonderful ideas – yet they do not line up with who I am. I am a dreamer, and unless I can find a way to bring those thoughts into reality (without going against who I am, for then I will only fail again) I really ought to just stay true to the person that I am.

So maybe instead of praying for a life apart – private land, large gardens, huge pantry… I should instead be seeking a way to decrease my expenses, while also decreasing my workload, in order to function within the level of energy I have been given – which is incredibly low.

How do I pull away from this lifestyle of always trying to do more, to push myself as people have often told me to do – when a lot of the time, it takes all of my effort just to get out of bed in the morning. How do I turn from what I believe others expect of me, and who I thought I should have been, and allow myself to be who I really am?

And who am I, really?

 

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