RSS

Tag Archives: autism guilt

Autism: Getting Harder

For three days after we got home from camping I had energy. It was so nice.

I stripped and waxed my kitchen floor, removing at least thirteen years of paint and buildup. I had not done that before, but I did remember my mother doing it.

For years I thought I would either remove the linoleum (or is it vinyl?) floor in my kitchen, or just tile directly over top. No matter how much I washed and bleached it, the floor never looked clean. But the tiles were too expensive, the styles were not what I wanted (I really wanted blue and white tiles, but they mainly had blacks, whites, browns, and grey.)

003

Then my mom was here, and we had to drive to another city for my appointment – one with larger building centres that might have the tile that I was looking for. They didn’t.

So I asked my mom about stripping and waxing, and she told me what I needed. We looked through that city, but could only find one industrial sized container of floor stripper. I quickly grew tired of looking. One day, however, we went in to the building centre near home, and there it was! Not huge. Not too expensive. Much better economically (as well as environmentally, I imagine) than removing and re-tiling the floor.

While she was here, she showed me what I was supposed to do on a small section of the floor under my stove. I later did under the fridge, but waited to do the rest of the floor after she left – after all, she had just spent seven years working almost like a slave cleaning (for free) for a relative. She needed a break, and I didn’t want her time here to be spent on projects for my house. Not at all. I just wanted to know what I was supposed to do, so one day when I was alone and had energy, I could do it.

Coming home from a week of camping seemed to be the right time. I woke up on that Monday morning with energy.

I did have a lot of cleaning and laundry to do during that time, and that kept me pretty busy – but I was also being given an old (near 30 years old) dishwasher from my SIL as they were moving to a new home that week, and the new house came with a good dishwasher.

I wasn’t sure that I wanted it. My upstairs is pretty full, and my kitchen didn’t have the space for a portable dishwasher (our other one was built in, but the seal broke, and I was just using it for a draining rack.)

So I spent a lot of the Monday doing the laundry, cleaning the house, and organizing the kitchen and dining rooms to make room for the dishwasher. Suddenly the floor of the kitchen was clear, and so I took that opportunity to strip it. That was a lot of work, and it was all I could accomplish in a day. So I left it like that, but felt really good about having put in a full, busy day of work.

The next day was similar. There was still so much to do – but again, I put in a full, busy day, and felt really good. I waxed the floor that afternoon.

The third day was also very busy – for I was still organizing as well as cleaning. I had to push myself then, but I got a lot done, and I felt really good about it.

And then I crashed.

Bad.

For the last six days I have been in an unending full blown panic attack. There seems to be no cause, as I have no appointments, have had nowhere to go, have had nothing to plan for, haven’t even had visitors – but I am panicking.

I am panicking, and exhausted, and feeling restless, and hopeless, and unable to motivate myself at all. In fact trying to motivate myself only causes my panic and restlessness to grow.

I suppose that I should be thankful for the three good days I had – for I don’t often even have that. I am thankful for those days, only… I feel stronger the guilt of the hard days, which don’t allow me to be productive, and don’t allow me to ‘hold up my end,’ and don’t allow me to give either what other people give themselves, or what they expect of me.

I feel guilty because the hard days far outweigh the good, and because of that I can’t even keep up with the basics of living let alone moving forward to give of myself to others (through work, or volunteering, or even visiting, or…?)

I feel guilty because after nearly 41 years, I would have hoped I could have won this battle against myself to be able to do and be more than I had in the past. Yet with each year that passes, it only seems to be getting harder.

 

Tags: , , , , , , ,

Autism: I See You

Layered with jackets, coats, toques, and gloves, he heads out the door. The weather report says it is -16 outside, and I believe it – I took my girls out for under a minute, and my little one was crying because her feet hurt. He has to spend the entire day outside. 8 hours in the snow and cold.

Day after day he heads to this job. Five days a week, and it is rare for him to complain. The weather is cold, it is hot, it is wet… All day he is busy outside, one person after another asking him to help them, hardly a moment to think. All day moving furniture. All day ‘peopling.’ Often he has to stay late. He comes home tired. Wet. Sweaty. Hungry. Day after day.

As he heads out the door, I sit in my chair at my computer, dogs on my lap. I pick up my tea to finish the last of it. Warm under my blanket, I acknowledge him leaving… usually. I feel guilty that he is going and I am staying. I know I can’t, but that doesn’t make me feel better. He likes his job, but I couldn’t do it. I couldn’t come even close. In fact, at this time the very idea of going out to work, to volunteer, to… pretty much anything, overwhelms me. Still I feel guilty.

Defensive, too. Not because I feel I do enough in comparison to him, but because… well, when he is home, I am nearly always sitting. I am paralyzed. It isn’t his fault, this is all me, but I can’t move when he is home – and I want to tell him this isn’t what I do all the time. When he is gone I might get up and clean. I play with our animals. I do the dishes and the laundry. I organize and rearrange our furniture (which I understand he doesn’t quite appreciate since he doesn’t like change…. still)

I exercise. I write my blog. I cook. Only no matter what I do, it rarely compares to what he does, and I feel guilty still. And there are lots of days when I am so overwhelmed with life that I actually do shut down and spend just about the entire day on the computer – while he is out moving the equivalent of two households of furniture in a day.

Defensive because it isn’t that I don’t see what he does, but I can’t. I would love to be able to go out to work, and be as busy as he is, and still live well – but that isn’t possible. I’ve tried. I’ve tried a lot, and I don’t do well at all. But then I still struggle a lot when I am at home with few places to go, and little I have to do. Not fair, but not because I don’t want to be.

Defensive because I do have an income of my own, and though I don’t go out to earn it, I do try to live to earn it – by writing this blog, and taking care of our home, and trying to get well so I can do more (only since I am so often overwhelmed and struggling, it is hard even when I am trying my very best to believe that I will actually ever get there.)

And then on his days off, he runs errands, and volunteers to sing and speak in the senior’s homes, and still deals with people – and he cooks those days, because I am paralyzed, and he tries. I know he does.

But I get overwhelmed by how he ‘isn’t as clean as me’; by wet counters, and open drawers, and extra dirty dishes, and so much meat! I get overwhelmed, and shut down, and he takes over. He does the cooking, and he does the dishes, and then he rests for the little time he has home. He does all of this, and still stays calm most of the time.

I am not easy to live with. I didn’t say I was. With my sensory issues, and extreme sensitivity to anything ‘wrong’ with the world (such as factory farms and the suffering of animals – and the greed of corporations that leave me unable to buy a new dishwasher because “they could make them to last, but don’t”) and my struggles with communication, and with changes to my routine, or being pulled out of my fixations, and my struggles with food, and… it isn’t possible for me to be easy to live with – it is not easy for me to live with other people.

But I do see him. I do see what he does. I do see who he is. And though I am often overwhelmed with how his life affects my issues, I am grateful for him – and really don’t know how I could live without him.

Easter 2016

 

Tags: , , , , , , , , , , ,

Autism: Mea Culpa

On Christmas day my son and I opened our presents from my husband, and were pleased with the chocolates and Thomas Kinkade puzzles he had got us. There is very little that we all have in common other than being introverts who enjoy spending time on our own things. Puzzles are something that we all love to do, and can do together. It was a good gift.

My puzzle was a ten-in-one, with the largest puzzles containing 500 pieces. My son’s was a 1000 piece puzzle of a cottage, lighthouse, and water. We started on that one, for the only way we would get it done was to work on it over the Christmas holidays.

We started it Christmas day, and worked on it at times throughout the next five days. We were doing pretty good – it was a hard puzzle after all. My son was getting the sky done (he often chooses the harder parts, for he is amazingly good at puzzles; always has been.) My husband and I were working on the house and trees, for it was easier for us to find the pieces.

As I said, things were going well.

For a bit of background information, a little while before Christmas we had bought cat grass to stop my cats from eating my avocado trees. When it sprouted, we put it on the table by the dining room window, since the one cat especially had been spending a lot of time there. They liked the cat grass, although the tiny plastic container that was provided, along with the peat moss, did not actually make a good place for the grass to grow – the cats would chew the grass, the peat moss would lift up, and the container would fall over.

I put it in a ceramic container, and it was better, but then I went over to the table to find Finn, our Siamese, had peed on the table. She had never done that before (she did have a preference for rugs as a protest whenever the weather got to bad to go outside, but the rugs had been removed.) My guess was that the grass on the table confused her to thinking it was ‘just like’ being outside (despite the fact that the container of grass was smaller than a tub of margarine.)

Finn

I cleaned it up, and moved the grass to another spot off the table, and the problem didn’t repeat itself.

Enter in day five of puzzle making. My son had been working on it in the morning, and things were dry then. I went over closer to lunch time, and the box with the sky pieces in it were all wet. Finn! Sure enough, the cat grass was right next to the box of sky pieces (my husband having placed it there to get into the freezer on top of which the grass had been moved, and he forgot to put it back after.)

My son’s Christmas present. Five days of work. Time with my family. All destroyed in one mistake.

My husband was out when this happened. My son was in the basement on his computer. I was the one who found it. I was the one who had to tell them. I was the one who had to figure out what to do (not that there really was an option, but in my feelings of guilt and shame, I could not think straight.)

Logically, I know this wasn’t my fault. Logically, I can see that in most things it is not my fault; not fully my fault, or at least not only my fault. The thing is, though, I do not often function from a logical standpoint. All things stem from my heart, and my heart condemns me for everything that goes wrong in everyone’s life – even if I had nothing at all to do with it, or wasn’t even around when it happened.

Mea Culpa: I am at fault. Always. In everything. As if my very existence means ruin for the rest of the world. Such shame… such a heavy weight of shame I have carried since early childhood.

And people respond to this look of guilt in me as if I must be truly guilty. I understand that. I do. But I wish they would understand that just because I look guilty, feel guilty, seem guilty… doesn’t mean I actually am. It is hard to defend myself when my heart condemns me for everything.

 

Tags: , , , , , , , , , ,

Autism: All My Fault

It was summertime. I guess I would have been about eight years old. We took a drive – my parents, my brothers, and me.

“Wait in the car,” we were told, as they took my younger brother across the street with them. They came back with a boat, and he came back with an armful of apricots. They sat him in the car, between my older brother and I, while they tied the boat on the roof. “Keep him in the car,” they told us.

I was on the drivers side. He climbed over my older brother, on the passenger side of the car, and forced his way out – though we tried to stop him.

He ran across the street to get an apricot he had dropped. My parents didn’t notice. There was no time to tell them.

He picked up his apricot, and ran back across the street. She came driving around the corner. She didn’t have time to see him, I guess. It was a little, blue car – or at least it remains that way in my mind.

“Why didn’t you keep him in the car,” my father screamed at us. My fault. My brother may die, and it’s all my fault, I thought.

I remember the dent in the silver bumper, where it had struck my brother’s head. The crowds of people that gathered around him. The ambulance that took him and my mother away.

My aunt watched us, as my parents spent the rest of the day in the hospital. We lay under blankets on the pull out sofa bed watching movies, as I remember it. They were home late that night – maybe around midnight. So strange, after such an accident.

My sense of time wasn’t great at that age. One morning, my brother didn’t wake up. We were dropped off at our neighbours house, as he was rushed to the hospital. In my mind, the two were connected. I was in my thirties before I learned otherwise.

He spent a large part of a year in the hospital – my mother there with him, leaving me at home with my father… He nearly died many times. Several times, he had died, when they brought him back to life. A string in his nose, a tube in his stomach, seizures, hallucinations… my fault. I should have kept him in the car. My fault he now has special needs, lives on disability, doesn’t think well… my fault. I should have held onto him.

It was somewhere around the same time. My younger brother was in the hospital again – he had been coughing up blood. My older brother and I were at home with my aunt. I was really, really sick. She gave me grape juice. I threw up all down the hallway – I couldn’t make it to the bathroom. She brought me upstairs to lie in bed. “Do you want Brandy to come with you,” she asked. Brandy was my dog. “No,” I said. I didn’t want her to get sick too.

My dad came home. He had bought me a pink canopy bed (I don’t know why he wasn’t at the hospital with my brother.) He left the door open, as he brought the bed in, and set it up. Then he went to move my Grandpa’s suburban that he had borrowed. He screamed my aunts name. My dog had been under the vehicle. He may have only clipped her tail, but she had a heart attack, and died.

If only I had brought her up with me… my fault. I killed my dog. Bad choice.

When I was in the eighth grade, we had a project for music class on composers. I was doing Beethoven. I had trouble working in the library with all my class there. It was too busy. I did my project at home, using our set of encyclopedias (no internet in those days.)

The next day, we were told the “B” encyclopedia had been stolen. The entire school blamed me – all the kids in my class, all the teachers… I tried to defend myself, and one of the girls in my class said, “my mom said that people who are in denial are usually guilty.” I had no way to prove myself innocent.

After a few days, the encyclopedia was returned (it was that girl who had taken it.) I never so much as received an apology. I knew I hadn’t done it, and felt guilty just the same. I learned then that I had no ability to defend myself. If others decided I was guilty, I would have to pay – even though I was innocent.

Shortly after I told on my dad at the age of fifteen, my parents got a divorce. My mom has been living in poverty, caring for my disabled brother since. When he died – though they had remarried by that point, he left her nothing, so that I wouldn’t end up with any of his money. She lives in poverty. My fault.

So when my kids were taken, and I was accused – I can’t defend myself. I always look guilty. Everything is my fault. Though others tell me the system is broken, I have learned to blame myself… even if just for the fact that I haven’t the ability to defend myself.

When I walk into stores, I feel guilty, though I have not stolen anything – what if they think I did?

When I talk to people, I feel guilty – as if I have hurt them, though we may have never met.

A few years ago, I was painting the siding on my house – alone. I was up on the ladder, in a very precarious position. My husband was out of town, camping (I had to work), and was driving home that day. The ladder shook. In that moment, I was terrified that I would fall and die, or my husband would be in an accident and die (all weekend I had been dreading something) and I was afraid for my son being left all alone.

I prayed so hard that we would be spared, for the sake of my son.

That day, as I came down off the ladder, and went in to read my Facebook, I found a man from my church had been killed when his tractor rolled on top of him. It happened at the same time I had been praying to be spared. My fault. If I hadn’t prayed to be saved, I would have died, and he might have lived.

Unreasonable, but that is how I have been taught to think.

So if you talk to me, or read my words, and think, “she sounds guilty,” know that this is why. I know I can’t defend myself, and much as I try to heal from this, I always feel guilty, for everything (I have learned) is my fault.

 

Tags: , , , , , , , , , , ,

 
%d bloggers like this: