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Monthly Archives: December 2017

Autism: Loads and Burdens

This sadness has been overwhelming me.

  • Does God want me?
  • Am I saved?
  • Why do I fail at everything?
  • Why am I so bad (why do I struggle with things other people don’t seem to?)
  • Will I ever do good (will anything I do have a positive impact on the world around me?)
  • Does anyone want me (will I ever feel like I belong anywhere?)

I think that maybe Christmas is a difficult time for me. Anyway, it has been hard this year, and I am feeling overwhelmed and shutting down, even though I haven’t done anything for it yet.

Time is speeding up, or I am slowing down, or… How did Christmas come again so fast? I am not at all ready, and I look at the decorations as if… as if people put them up in May or something, and it all feels so wrong.

Time is speeding up for me. I go to start something, learn something, research something, and suddenly the day is over though I have done nothing. It is very frustrating. Is it any wonder I wish this life allowed magic, or cheat codes to get through? I don’t expect to win any awards, or accomplish any great thing anyway, but I could sure use some help to get through the day and take care of what I have without being so overwhelmed all of the time, but then…

Loads and burdens.

My pastor talks frequently about loads and burdens – how some people have heavy burdens they won’t share with other people for fear of asking too much of people, and other people ask for help with loads that they should learn to carry themselves.

I have a lot of burdens, this is true. And sometimes I ask for help with them, but mostly I don’t. Other people don’t understand, and can’t seem to help much anyway.

But then I guess what I struggle most with – day to day living – people would consider loads. I know they are… loads, that is. I should be able to handle them. Other people do. Other people are able to do all I struggle with and so much more. I should be able – but I am not.

Loads and burdens.

I ask too much.

Having said all of that, I am struggling these days. I have been writing this blog for nearly 2.5 years – longer than I have ever kept going at any type of work in my life, without a break. But I have also been pushing myself really hard to keep going these past 7 or 8 months or so.

I need a break.

So in light of Christmas coming (and despite how hard this is for me to admit even to myself) I have decided to take some time off from writing my blog, and think that Christmas is probably the time I need to do that.

I am hoping that a month will be enough, and plan to start writing again in mid-January.

Until then I want to wish all of you a Merry Christmas, and a Happy New Year, and to thank all of you for your support over these years.

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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: Train Crossing

Well the day came, and since I didn’t have the bus booked I had to take the van. Well, I guess for that part I would have had to take the van anyway, since we only book the bus to take us home. After all, if my husband is going into town anyway, why would be spent $3.50 in bus tickets to take us to the same place at around the same time?

My husband had offered to take us home after, so I wouldn’t have to return (in the dark) at night to pick him up from work when he was done. I don’t like driving in the dark. I don’t like driving.

This was the day I had set aside to do all of my Christmas shopping… well, most. My son was coming with me, so I would have to pick up things for him on another day. Everything else had to get done. When would I get another chance to do it?

I have really been struggling with Christmas this year. All the commercialism makes me feel sick. I look in the fliers and they seem to be telling us that we should be spending hundreds of dollars on each gift (if we really loved our family!) Hundreds! What ever happened to the $20 maximum for the closest people in our lives? Or better, the orange, Christmas candy, and mittens that used to fill stockings a hundred or so years ago.

When did Christmas become about going into debt?

The more I look in these fliers, the more I hate the idea of buying anything. Such pressure. Such greed. This is not what Christmas is supposed to be.

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But like most other people I do have people to buy for, and I don’t want them thinking I don’t care about them. So I went out looking.

As I left the thrift store where my husband works, a train started going by on the tracks we had to cross to get to town. I was first at the stop sign on my side – needing to turn right to cross the tracks. Across from me was the Handy Dart – the bus I had planned to book to get us home. It was being driven by a person my son and I both know. She was first to the stop sign across from me, and had arrived there before I had.

On the road perpendicular to us – the one that crossed the train tracks – there was no stop sign, and there were several people stopped at the train crossing there.

I was sitting there, in the driver’s seat of my van, panicking for two reasons:

  1. Knowing who I was, the driver of the Handy Dart would recognize me sitting in the driver’s seat of my van, and question how I qualified to take the Handy Dart (to be fair, in my application for this bus I did say that I could drive, but that it causes me a lot of anxiety, and I still was approved.)
  2. I struggle with the rules for a two way stop where there is no stop sign in the other direction. She was there first, so I wanted to let her go first – but she was turning left where I was turning right, and in such situations in the past the people turning right went first regardless of who got there first…

Perhaps I shouldn’t care what other people think of me, but I do. I care a LOT! So it bothers me when I think that other people might think that I don’t belong somewhere, or shouldn’t qualify for something, or…

My son said that if anyone had been in the van with us, they would never question that I should qualify for the Handy Dart (he has also said that in the past while we were standing outside the thrift store waiting for the bus, and I was so anxious I couldn’t think – to be fair, the bus never showed on that trip, so the panic was justified – I ended up having a full meltdown then.)

Anyway, I hesitated for a second, and when she didn’t go, I did. But the panic never let up.

I wanted, and had planned to get all of my Christmas shopping done that morning, but after the experience I had waiting for the train at that stop sign, all I wanted to do was be home with my girls. We did go to every mall in town (we live in a small town, so when I say mall, there are only a few stores in each) but I didn’t get any shopping done.

I couldn’t.

And the rest of the day I was anxious, teary, and emotional. Sometimes I think I shouldn’t be driving at all. It is all just too much for me.

 

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Autism: Sometimes I Can’t

I had the best of plans for the day. I even knew in enough advance that I wanted to go that I could (should) have booked the bus, only…

On the Monday, the day I was supposed to phone, we were waiting for a visitor. We. My husband was home. I was glad he was home because I had a visitor coming, and I struggle a lot with such things. He helps. Only when he is home I can almost never do… things. Like housework, or phoning people.

Phones are hard for me. Really hard.

When I have to make a phone call, I need complete silence. I rehearse over and over what I am going to say in my head, and I write it down just to be sure, and I panic before I pick up the phone and dial. I can’t do that when someone else is around, and my husband was home from work that day (having switched days off with a coworker that week.)

So my husband was home, and that was difficult – for making the phone call at least.

And we were waiting for a visitor.

It doesn’t exactly matter who the visitor is, or how long they are going to stay, or what they are coming for – expecting someone to come to my home causes severe anxiety for me. Another thing that is really hard.

Sometimes it is worth it – like when my friend comes over every other week. I like visiting with her, and I know exactly when she is coming, and exactly how long she is staying. Though I still panic before, and crash after, I am always happy that she came.

Other times the visit is necessary, like when I have people coming over to fix my windows, or install new light fixtures, or… then, though they may only be at my home for half an hour, and though I might know approximately when they are coming, I still panic before and during – and though it is a short part of my day, I am exhausted for days after.

Then there are times like these. The visitor was the previous owner of all three of my dogs. When they gave us Misty-Grace, they asked my husband to keep his eyes out at work (the thrift store) for dog blankets, cushions, and such. They run a kennel, and have multiple dogs of their own. So we had collected a large stack of such things for them – and they bought a sleigh for us (one of the wooden baby sleighs for walking on the snow – since my dogs frequently prefer to be carried to walking.)

He was coming to exchange the items and see my girls. It was fine. I was happy he was coming, but anxious and panicky as always. We didn’t know when he was coming. He was driving from out of town, about an hour away. We didn’t know how long he was staying.

So we waited. And as I waited, knowing I was supposed to be making this phone call to book the bus for a trip I already knew I wanted to take, my panic grew.

In that level of anxiety, I can’t function. I couldn’t make the phone call. I couldn’t do anything at all. I was dizzy, and numb, and panicky.

By the time he arrived, it was 4 in the afternoon – and the bus place closes at 4:30. I knew through the day that I should be making the phone call, and I kept looking at the phone and trying to work up the courage, but I just couldn’t do it.

I had to do it. I wanted to do it. I remembered it needed to be done. I knew what I needed to ask for. And still…

Sometimes I just can’t.

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Autism: Dead or Alive

I woke up coughing at 5:30am. This was not related to the smoke in the house that I mentioned on my last post – though it probably had something to do with it, my house was not smoky on this particular night.

I felt like I was choking, and my first thought (which lasted for several minutes) was that there had been a fire and I died of smoke inhalation. For about 5 minutes, even though I could dimly see my room around me, felt and heard ‘my girls’ beside me, and was aware of one of my cats on the bed as well (I have a very full bed these days!) I completely believed this to be true.

When I told people at my Life Group (Bible Study) about this, one of them asked if I was in Heaven. When I said, “No, I was looking at my clock, and into the faces of my dogs,” she mentioned something about the possibility that I wouldn’t make it there; to heaven, that is…

Panic!

If I dream I have died (though this wasn’t a dream) and don’t find myself in heaven – does that mean I am not saved?

Thankfully my husband responded that he believes there will be animals in heaven, and gave his reasons – so in a few seconds I was calmed by his words (thank you, dear husband!) I need my dogs. I don’t think that will change when I am dead.

So there I was, lying awake in bed, fully convinced that this was the beginning of the afterlife and I would be trapped in this place (at least I had my babies with me!) when I realized I must be alive.

How disorienting that was!

It was then that I felt a deep longing for my youngest (foster) daughter who was taken from me 8 years ago, and remembered that I had been dreaming of her – though the dream escapes me now – when I was awakened by the choking.

Perhaps in those last moments of my dream there was a fire, and I was dying in it.

What a strange experience that was, and I wonder if there are other people in the world who are fully alive, and believe they are dead. So weird.

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