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Autism: Excruciatingly Frustrating

There is this electric piano that I have in my living room It belongs to my niece, who has been… travelling the world for a couple of years. She asked us to store some things for her, and this was one of those things.

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When she brought it, she thought that I would like to use it. At the time (having had little warning these items were being brought to my home for storage) I didn’t know where to put it. I have a keyboard of my own, and so told her we would just store it for now.

Only we haven’t any good storage in this house, and it just ended up on the floor in our basement hallway. Fearing it would be damaged by flooding (the washer has been overflowing at times, and the one side of our home has been leaking, since when the new roof was put on several years ago, they removed all the gutters and downspouts so the water now comes into our home on one side) I moved things around and found space for it in our living room.

I would have used it then, only I didn’t know where she had put the cords and attachments, and didn’t want to go through her things looking for them. I asked my husband to – this was maybe a year ago – but he never did.

I also asked him to NOT use the piano for storing his things as he came in the door – but of course he does. Of course he does. He doesn’t understand me. He doesn’t understand my need for him NOT to do those things.

Anyway…

Another niece who lives in town asked, since we aren’t using it (I would, only my husband never did find out where the cords and attachments were, so I couldn’t) if she could take the piano to use. I don’t mind her taking it. It would give a place where I could bring my keyboard out and actually be able to use it (so long as my husband doesn’t store things on it, which causes me a lot of distress) but I still don’t know where the attachments are. She would need them to use it, too.

I tried.

I tried so hard to explain to him that in order to use it, she would need to ask our other niece (her cousin) where the attachments were, but…

He never seems to understand me.

He never does.

The longer we have been together, the less he seems to hear. It makes me want to cry. It does make me cry.

“(Her husband) is a really smart guy,” my husband told me. “He can figure it out.”

Okay, so I am stupid for not being able to do this?

It isn’t about being smart, or about being able to understand construction, or electrical systems, or… “She needs to ask where the parts are,” I said… but he didn’t get it. “C can figure it out,” he said again.

Excruciatingly frustrating!!!

It isn’t about being smart. I am smart enough to know that what they need is to ask where the parts are – not to figure out a way to not need those parts.

Sometimes he makes me feel like he thinks I am so stupid – when he is the one not understanding what it is I am saying. This is how people have responded to me all of my life – and I try so hard to explain. And it seems to me I couldn’t be more clear. And they think I am being clear – but then they twist my words, or interpret them to mean something they never did – and they are so sure they are right they don’t give me a chance. They just keep trying to correct my correction to fit in with what they believe I am saying…

But I am not! What I am saying is what I am saying. There is no need for interpretation. There is no need to ‘look between the lines.’ It is all right there, clear as day. I don’t know why they can’t understand.

I don’t know why they respond to me as if they think I am stupid. I am not stupid. I know what I am saying – they are the ones who misinterpret.

They have always made me feel like they think I am stupid, and it hurts more than I can express – but he is my husband! He shouldn’t be making me feel that way.

And when they make me feel that way? I become so upset I shut down – which only goes to confirm for them what they believed about me in the first place.

So, so frustrating. So painful. So wrong.

Will they ever learn?

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Autism: Hostile World

I don’t belong here.

It has been the resounding theme of my life.

Unliked. Unwanted. Not like them.

Not trusted. Not accepted. Not belonging.

I want to be liked.

I try to fit in.

They allow me…

Because it is Christian.

Because I am… family (of a sort.)

But not because I belong.

I don’t.

First they let me know;

By glances and actions rather than words.

I try harder, and harder still.

And rather than improve their acceptance of me –

It gets worse.

They don’t want me there, and…

I wish I could be a person who doesn’t care.

But of course I care.

I’ve always cared.

Yet if I can’t be accepted,

My impulse is to run.

Maybe another school,

Another group,

Another part of town?

Maybe another province,

A city where I have never been?

But wherever I go,

Whatever I do,

There I am:

Not belonging.

So I build these worlds.

These fantasies in my mind.

And the more pain my reality contains,

The further from reality my fantasies take me;

Until there is little left

To bring joy or relief

In the world around me.

So much fear.

So much pain.

I would spend most,

If not all of my life,

Dreaming;

Just to endure it.

But the older I get,

The less the dreams satisfy;

For I know my dreams,

These fantasies,

They won’t come true.

I return to a world that feels hostile to me.

Alone and fearful and full of pain

Thinking “maybe if I try harder,

Try harder,

Try harder…”

But the harder I try,

The less I belong.

I wish I didn’t care,

But I do.

I am still nothing more than that small child,

Crying to sleep at night

For being abandoned in a big, frightening, painful world

That never wanted her.

me at 7

 

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Autism: Overrated Sanity

And then the days come when I am once more interested in learning and growing. This both surprises and saddens me – how could life go on after such pain? It often feels that when my heart breaks, it actually does break – and there should be nothing after it. No life. No laughter. No joy.

Perhaps death. Death feels like the appropriate answer to a broken heart. And in the moment only death holds hope that peace and joy could ever come again. I am not suicidal, but there are frequent moments in my life where I long for death. This is not the same thing. One is an action, the other is a prayer.

Mostly I pray, when things hurt so bad (and for me I get to that spot several times a month even on a decent month, for my past holds many painful memories, and my mind frequently forces me to relive the trauma) that God will take me home. Please take me home. Please don’t leave me here any longer. I can’t do this any more. I don’t want to be here anymore.

And in those moments I realize that I am absolutely no different from the child I was long ago, lying in my bed, praying for the same. I don’t belong here. I never have.

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This world is not my home, and this is a truth I can never alter – but there are some things that help me to hold on just a little longer.

I suppose for other people it is family and friends – and I do hold on for them. I pray to stay when I long to go because of what my death might do to other people… not a lot of other people, but there are some. What would happen to my son? To my girls (dogs?) To my mom?

I pray to stay for them, but make no mistake – this is a sacrifice for the ones I love. For me the sacrifice is in living, for death means home, and home is what I long for.

The other day I was watching Sherlock and he said something that I immediately had to go and type down (though I may not have it quoted word for word.) He said:

“Your death is an event that happens to other people. Your life is not your own; keep your hands off of it.”

I am not suicidal, but to stay is a sacrifice – and there are many days when I am lying in bed thinking I can’t keep holding on. I just can’t.

There are some things in life that make it easier to stay for a little longer – and that usually comes out in hobbies and events, such as learning to can. I can’t learn when I am struggling; my mind shuts down and won’t let any new knowledge in.

So when I got up in the morning and decided that this was the day I would make my first attempt at canning, I knew. I knew that whatever it was that I used to convince myself that what was real really wasn’t was worth it… is that too confusing?

Perhaps my grip on reality isn’t strong – but it isn’t strong on purpose. My reality threatens my sanity, and it is only… ONLY through letting go of the truth a little, and accepting the possibility that there is a way to escape the confines of the natural law – only then can I get up and live again.

However I do worry about where the line is, and how much more I can take before I cross it. Then again, there are days when I think that sanity is highly overrated.

 

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Autism: Value In What I Can Do

Talking with my psychiatrist the a couple of weeks ago brought out some pretty severe anxiety, defensiveness, and an overall shouting in my head of “I can’t.” At the same time, I have been fixated on jobs… careers… ideas ever since.

Okay, so I can’t go out to work; can’t work with people; can’t bring myself to leave my dogs; can’t do anything that would increase my anxiety; can’t do something that would put risk to my husband’s retirement, or would mean I would have to make up the difference in income… there are so many things I can’t do – and these are the things that have been going through my head since my appointment, thereby significantly increasing both my anxiety around who I am, and what I should be doing, and my irritation at the pressure being put on me from other people.

I don’t handle pressure well.

But with all the things I can’t do, there must be something I can – if only I could figure out what that is. When I seek help in finding out what I might be able to do, however, the people I am talking to get frustrated with me. They want me to be able to accept some type of ‘typical’ work, and despite knowing about my disabilities, they still seem to expect me to overcome them in order to make their jobs easier.

Since they hear my protests at their suggestions, but don’t understand that I have enough experience to know my limits, they (like most people in my life) just believe I am being difficult. That opinion is not true. Life is difficult for me, and I have many limitations – but I am not being difficult towards them. They all give up on me. They always have.

Still, I don’t believe that just because what I need is very different from the type of help they are used to giving, it means there is no answer for me. There are some things I look at and think, “I could do that!”

The trouble is that such work is not easy to find, and when I am searching for it, I can’t even think of the right words. Words are not an easy thing for me to find at the best of times. It is also a challenge that people put such value on some things, and none at all on others. What gives others the right to determine how much value the things I can do have?

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I can understand the value in some jobs: Doctors have to have a lot of hard earned education to be able to keep us healthy and alive. Police (hopefully) work dangerous jobs to keep the rest of us safe. Teachers have to put in many hours of planning and preparation to prepare children for the world, and have to learn to keep calm even in stressful situations (behaviour issues.)

Yet so many other jobs… what makes an artists time of less worth than, say, a bankers? Not that I am an artist at all, but it is just an example. Why does one struggle to make ends meet, where the other does quite well? I suppose I am an idealist, but I think that everyone should be able to spend their time doing what they are best at; or feel best doing – and be valued just as well as everyone else for doing it.

If I did find work I could do, I think it would look something like this:

  • It would be solitary work (I can’t function well with other people around.)
  • It would be in my home, or at least have a private bathroom and kitchen for me alone to use.
  • I could bring my dogs with me, for I am anxious apart from them.
  • It would not have high pressure – like security, but somewhere safe, or a caretaker position, that doesn’t require much skill or energy… mostly I would be there to watch to ensure things are going well rather than having to always be doing something.
  • I would be able to pursue my own interests while I was working, without that being part of my job (like the jobs in the movies where people are building puzzles or playing games while working, and it is an acceptable use of time.)
  • I would mostly just have to be there, but my time would still for the most part be my own.
  • I wouldn’t have to travel much for the work – so again, I would live there at least most of the time.
  • Aside from my choices in activities, the environment would be quiet most of the time.

Maybe an apartment manager if I could have professionals do the repairs, and mostly just took the rent payments – perhaps with a co-op or something where the residents helped with the cleaning of the building, and grounds keeping. Maybe a laundromat attendant (if I could live in a suite above, or something). Maybe a lighthouse keeper, if most of what I had to do was turn on the light at sunset.

Maybe those aren’t great jobs for me, but my point is: there must be something I could do – if only I could figure out what it was, and find the job to match.

 

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Autism: Judged and Frustrated

The thing was, I was starting to feel good. It might not have seemed like much to other people, but had anyone been familiar with how my thoughts have been fixated for the past… thirty years, really, they would know that this has probably been the biggest breakthrough of my life.

Sure people respond as if to say that when a dream doesn’t work out, accept it and move on – and I admit that might be good advice; but it is not me. Believe me, I have tried to let this one go. Especially since the loss of my children, I have tried to let it go. What good has it done me anyway? It has only led me on a path of failure and pain.

Yet for all the reality of it, I still wanted to be able to have children. I still ached for this. I still wanted it bad enough to dream of horrible circumstances I could find myself in that would allow this… fixation to become a reality. I knew this was bad for me, bad for my marriage, bad for my relationship with my son – but I letting go of this demand in my heart and mind for children,which drowned out anything that might have been a blessing to replace it, was impossible.

I had my son, and I ran my daycare, and I had children in my life for a time – and then it was over; and I still wanted them. The adoption fell through, and it more than broke my heart; it traumatized me. I am still living with the trauma of that. I was left broken, and I was given my Pomeranian, and I loved him. So I got up, and I tried to live again in the world where I not only didn’t belong, but where others – by look, action, or word – told me over and over I didn’t belong (and it was my fault.)

And I failed.

I still had my dog, and I loved him. I enjoyed my time with him – yet still felt that something, in the form of children, was missing from my life. Then he died, and my heart broke again, and the trauma and fear grew.

So I was given another dog. The pain was still overwhelming, yet she brought me joy. I love that she is tiny (6.5lbs) and follows me everywhere, and wants near constant attention. She filled a place in my heart that has been aching to be filled for decades, and I found contentment with her. I was happy enough that when her previous owners asked me if I would take her mother, too, my initial answer leaned towards ‘no.’ (So very unlike me for this type of thing.)

Yet happily, after months of consideration, I decided to take her. Now I have ‘my girls,’ and I have felt so content with them that it… doesn’t replace, but instead answers my desire for children. A better blessing for a person like me.

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So I went into the doctor’s office feeling thankful for this contentment that was the end of a 30 year battle that others rarely understood the depth of – and she was disappointed in me, and wanting to give up on me, because I wasn’t visiting people more, and I was still so anxious over work.

She wanted me to contact a couple of places about work and behaviour therapy for people with Autism – and I did… yet what I got from them was more of the same: judgment and disappointment that I wasn’t healed enough to allow them to help me work (after all, that should be the goal of every adult, yes?)

Okay, so I am not ready to go back into their world. I wonder if they had experienced what I have lived through if they would be able… but then the success stories they keep talking to me about (as if that should be my goal) is for people who hadn’t been able to go to college – then did, or hadn’t been able to find work – then did… they forget that when it comes to me, I am on the other side of this: I have been to college, I have worked, I have gone out there and tried – and I failed so bad that over and over the trauma grew.

I don’t need to “go out there” to find that I can do it – I need to be healed from my time “out there” because I couldn’t do it.

Besides that, they miss the point. They are looking for some huge goal that looks normal to them, and missing the huge battle that has just been won: I can’t have children, and I am finally okay with that. I was feeling good about that, and was met with judgment and disappointment…

Another small moment in their world… just a short time… and by their look, words, and actions I hear that I don’t belong – and I never will. Another failure. Another failure that says I can’t, and they get frustrated with me when they tell me I can, and I don’t believe them.

 

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Autism: Residual Pain

Residual effects of yesterday.

I am still struggling with overwhelming sadness and a sense of worthlessness. Other people write on their birthdays how blessed they are to do things and celebrate with their family and friends. Does that mean I am not blessed? We did nothing. I feel cursed. Broken. Alone. I prayed that it would be different, but many of my prayers are met with silence. I can only conclude that God is angry with me.

It isn’t that I believe He shouldn’t be, but… if I could do better, don’t you believe I would? And didn’t He come to save the broken and lost? Does anyone want saving more than me? Has anyone prayed as often for the evil to be taken, and to be made good, as I have? Maybe others have, and so have I, but years later and I am still broken. My life, my family, my heart – all broken.

This is reflected in the children I couldn’t conceive, and the children I couldn’t keep, and the family who abandoned me to their own activities on my 40th birthday. Not blessed. Cursed. And though I know I deserve this, it hurts just the same.

Once again I have to explain to the child I was, who held on for the belief that things had to get better, that things really don’t get better. And I try to hide from her the fear that all those years she lived in pain and terror were really the best she would ever get. And it breaks me, as much as if I were having to tell a child standing in front of me that this would be their reality. It breaks me, over and over, like a near drowned shipwreck victim being smashed against the rocks by the waves.

I want to write to you about success and healing, but what comes out is pain – for that is the experience I live with. Moments of happiness surrounded by weeks of pain. To write anything else would be a lie.

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Autism: Happy 40th:(

My head is pounding and I am struggling to stop crying. I don’t know why I hoped for anything better. I set my alarm to wake up for 7:40am so I would have time to get ready for church. My husband had the fire going, and bacon cooking in the kitchen. I was in a good mood to start out. I took my dog outside, then fed her.

When I came in, the fire was nearly out. Just burning paper, I guess. The bacon, which despite eating mostly plant based foods, I would have eaten today, was for my husband alone. Arrogant of me, I suppose, to believe they were for me (even if it was my birthday.) I got ready for church, but by then there was no time for breakfast.

I don’t do well even missing one meal. At church I was so hungry it was hard to stand… so weak it was hard to pay attention. One person said, “Happy Birthday!” He seemed to mean it. I didn’t feel well. When I got home, I had oatmeal and cappuccino, and felt more awake after.

It was 10:30am. My husband went to his chair to read, so I went on my computer. The time went by. My dog was sick (I found out later that night she was walking from my couch, across my end table, over to the cat stand to eat Finn’s food. Oy! I put her baby gate between the table and stand, and she felt better after that.) I took her out many times, and had to clean her up several times, too.

At 2pm, an hour before I usually start it, my husband put the chicken on. I had agreed that for birthdays, holidays, and when away from home, I would eat meat so we could eat together. He wanted an early supper so we could go to a missionary event at our church that night. I agreed to eat at 5pm instead of 6.

I had planned on making the meal that night, despite it being Sunday, because it was very important to me that everything was done the way I like it (and he tends to change things with food.) Only he was in the kitchen, and I can neither go in when someone is there, or hover to ensure he does it ‘right’ (because he gets offended) so I stayed on the computer, and at one point took my dog for a walk.

They knew I was going for a walk, for I had trouble finding the leash and harness (after her surgery, we weren’t able to go for a while, and things were out of place.) Yet despite being my birthday, no one offered to come with me.

At 4:10pm, I heard my husband mashing the potatoes. They shouldn’t have even been turned on until then. At 4:20, I smelled sweet peppers (not the vegetable I like with roast chicken.) I started crying. At 4:38, he announced it was ready, and I went into full meltdown. Everything was wrong. Everything was different. The potatoes were cold. The chicken was upside down, so instead of enjoying the crispy skin (pretty much the reason I agreed to this meal) it was soggy, and I cried more for the chicken who lost its life for this. The vegetable was the wrong type. The spices in the gravy were in different amounts, so tasted different, and it wasn’t thick enough (I had him thicken it.) It was just wrong!

It took me twenty minutes (a record for me, maybe) to fight the meltdown and come out to eat. I know he was trying. I know he didn’t mean to ‘get it wrong.’ I know this, but it hurt just the same. I cried the whole night. After all, this was my 40th birthday. It should have been different.

My son made me a cherry cheese pie (I can’t eat cake – and shouldn’t be eating dairy, but I do like it, and so asked for this.) It is what he does. When they brought out the candle, I tried to make a wish (Yes, I still do that, and it still matters) but Clara growled at my son, who sprayed her with water, making her growl more. I cried for her. I cried for him. I cried for Gryff, my dog that died leaving me heartbroken, and needing to find another. I cried for me.

I sent my husband out to the meeting. Though I fully intended to go that morning, I couldn’t stop crying that night, and leaving the house was no longer an option. He would have stayed, but there was no point. Had I been near my mom, things would have been different – but she is 4,000km away. His family is here to plan things like this for him, but I only have him, and this wasn’t enough.

I am not angry. I am sad. I needed this to be a really good day – different from the others – and it wasn’t. It hurt. It piled on the pain from all of my losses, and said, “This is all you deserve, and this is all you will ever get.” My head and my heart are full of pain.

Happy 40th Birthday to me.

niagara falls

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Posted by on October 14, 2016 in Experiences of an Autistic

 

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