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Monthly Archives: January 2017

Autism: Late Phone Call

People who know me know that if they are going to call me, they need to give me the details of the call: time, date, reason…

I don’t like phones. I mean, I really don’t like phones. It starts with the unexpected ringing. Loud noises. Never a good thing. Then there is the unexpected: who is on the other end of the line? Why are they calling me? Are they going to make me feel bad about something (like not sponsoring another child in the world who is struggling – which I would if I could, but…)

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Are they going to try to sell me something? Am I going to have to hang up on them, or find some excuse to get off the phone (like how people wanting to do surveys tend to choose the moment I am really busy making supper to call?) Am I going to end up resenting them?

Will I know what to say, or how to respond? My processing isn’t as fast as people seem to expect, so they get… annoyed, maybe, while waiting for my answers. That is why I like to know what the call is about – at least then, I can try to plan some things that I will need to say. Often I will write things down then.

Will I even be able to focus on the conversation? Likely not. Verbal is quite hard for me – that is why I prefer email. Often I will start saying something, and lose my train of thought – or I will try to listen to them, but a word sets off a series of pictures in my mind, until I forgot what they are talking about.

If it is important for me to remember what is being said, I will often have my clipboard with me so I can write things down as we are talking. That helps – but if I don’t know the call is coming, I probably won’t have that. Even then, if the person is talking too fast, I won’t be able to get the important things down – I am not good at note taking.

If they tell me they are going to call, it also gives me the opportunity to let them know if I won’t be available to answer. Maybe they don’t care if I miss them, but I will – and it will make me afraid to go out next time. Best to let me know.

On this day, I knew the call was coming, and I was prepared – or so I thought. We don’t have cordless phones. We did, but it broke, and the new ones we got to replace it were no good – I gave up on cordless for that reason. I suppose they expect people to be buying cell phones, or smart phones or whatever every year or so, and they don’t put much into cordless landline phones anymore.

Typically I have been answering in my dining room, and since I don’t talk to this person often, we end up talking for hours. The dining chair is hard, and I spend most of the time with my dogs trying to figure out how to get up on my lap, and stay comfortable. That makes it very difficult for me to concentrate.

So this time, I was ready! The call was coming at 1pm – we had arranged that. I went to my bedroom, and had my clipboard with me, and a good pen (and a pencil, just in case.) My dogs came to the room with me, and got lots of attention right before 1pm, so they were sleeping on their pillow on my bed.

I was prepared! Then 1pm came, and the phone didn’t ring. Did I somehow knock it off the hook? Nope. Was it plugged in right? Of course, if it wasn’t, the dining room phone would have rang. Did I get the day wrong? No – it was Thursday, and we had only arranged it the day before.

Every minute that passed brought more anxiety, until 15 minutes past the hour, I was in a full panic attack – sure that something was really wrong. Maybe she was angry with me. Maybe she was trying to figure out a way to say ‘no’ to my (really important) request. Maybe something happened to her. I started out really excited to talk to her – even on a phone – and ended up believing my world was about to come crashing down around me… again!

And then the phone rang, and we talked for two hours, and everything was fine.

I don’t think I will ever understand how someone can arrange for something at a certain time, and then be late for the meeting. It just isn’t who I am.

And if I am ever that late for something, or late at all, really – there is likely something very wrong!

 

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Autism: Winter Blues

January and February seem to be the hardest months of the year for me. This has been true for as long as I can remember. I don’t know if this has to do with the darkness of the months (though in that case, December should be bad as well) or the cold that keeps me inside, or the dryness of the air that irritates my skin, or… likely, as in most things, it is a whole combination of factors. Whatever the reason, these months are ones where all I can do is try to endure.

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The winter I was seventeen, the irritation and fear got so bad that I ended up leaving home and staying in a women’s shelter. I was (for good reason) afraid of my younger brother, whose medication made him extremely aggressive at that time – but I live with my mom, and had my own space, and things only got worse once I left home. It is something I have regretted for years since, and something I would change if I had the chance to do it again – yet I remember the intensity I was feeling at the time, and there seemed to be no other option. Winter does that to me.

The winter I was fifteen, it was the same time of year when I told my boyfriend what my father had been doing to me. It was a secret I had held onto for years – and while people say it is better to speak of such things, I don’t believe it has helped me to share it. I think it likely made things a lot harder for myself and those closest to me. Do I regret sharing it? I don’t know. What I do know is that:

  • it broke my relationship with my older brother (who was my best friend up until that point,)
  • the people who knew trusted me less after it was said,
  • my extended family on my father’s side, who I was very close to before this, felt distant after (my father was so well liked, they thought I must have been mistaken (I wasn’t,)
  • my mother (who divorced my father after that) has lived in poverty since…
  • I had a really hard time explaining to people who didn’t know where my father was during the time he was in jail
  • when we went to court, I couldn’t speak, so nothing happened except for me being stressed out
  • nothing improved for me in sharing this; instead everything got harder
  • my father died less than 9 years later – if I could have just held on, it wouldn’t have cost my family so much

The past two winters I have been so sick during these months that I could hardly move – in 2015, I put my back out shovelling just after New Year’s when we had 1.5 feet of snow fall in one day. It was the first time I ever called into work sick, and I was off for a week. Even when I went back, it was months before I could get back to doing housekeeping, and even then I was really slow. Though all the x-rays showed was a little bit of arthritis, I still struggle with back pain that doesn’t seem to improve with use, exercise, or even rest.

Then in 2016, I was weaning off of my anti-depressant medications, which caused such severe dizziness and nausea that I couldn’t get off the couch (for even sitting up left me really sick) for all of January and February.

This year, things haven’t gotten so bad – yet. But the exhaustion and irritation are very much a part of my every day experiences, and motivation is very much not! All I can do is try to hold on and get through it (I suppose if we had money, this would be the time of the year we should travel to someplace warm and sunny) and hope that nothing big is lost during this time.

 

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Autism: Driven By Compulsion

This morning I have such a strong desire to research floor plans for houses (for no reason other than it is an obsession of mine) that even coming to write my blog is extremely difficult. Yet I am two posts behind – for my posts that are scheduled three weeks in advance in order to reduce my anxiety – and I must write. For every word, however, I ache to pull out a pad of paper to draw, or to open up my internet browser and search.

My sleep has been broken lately, and that really doesn’t help with my functioning level. It is my own fault, really, for I will continue to eat the gluten that causes it. It is just too hard to change the foods I eat long-term, for the change always leaves me feeling sick.

It also doesn’t help that everything keeps me awake: my husband snoring, my cat purring, wrinkles in the sheets, not enough room to stretch out (which causes me pretty bad back pain every night), static… my house is so dry right now that every time I move at night I see flashes of light like fireflies flying off of me in all directions. I worry sometimes that the sparks will start a fire!

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It isn’t only at night, either. During the day, my dogs come to give me kisses, and get shocks instead. The zapping loudly breaks the silence. I am not sure what to do about it. I do use fabric softener in my laundry – but then I like wearing fleece, and fleece on fleece seems to increase the static.

I am tired. I am not thinking well. I am not functioning well. My nose is irritated, and often bleeding from the dryness in my house… I suppose I could get a humidifier, but they scare me. Once, when my son was about 6 weeks old, we got a bad cold. I put on a humidifier (as the baby books suggested) and my cold dropped to my lungs so I could hardly breathe. I thought I was going to die – I really did. Ever since, the very idea of using humidifiers has caused me strong fear.

When things are going like this for me, it is my fixations that drive me. When my functioning is low, all I can do is give in to my obsessions and compulsions. For this week that means playing Sims 2 Pets on the PC, watching ‘Angel’ on Netflix, and drawing and searching for house plans. Not at all productive, but I haven’t the strength or energy to fight it.

Besides, I have spent several hours cleaning this week. I did visit with a friend, and talked on the phone to my mom. I have taken care of my dogs, visited with my cats and son, and made supper when it was my night to do it. I might be spending nearly all of my time right now on my fixations – and that isn’t great – but I also need to remember all of those times when I did overcome the compulsion, and took care of all of those things that really needed to be done.

So rather than focus on where I was stuck this week, I think I should really be thankful for where I succeeded… I wonder if that might be a better way to respond to all people – after all, every one of us struggles with something.

 
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Posted by on January 25, 2017 in Poetry: My Creative Outlet

 

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Autism: Extended Support

I am not much of a party person; not at all in fact. So I didn’t do much for New Years Eve this year. We were in bed with the lights off by 10:30pm in fact – later than usual, I admit, but not too different from any other night when my husband doesn’t have to work the next day.

At 12:01am, Clara ran up to me whimpering, then both my girls ran barking to their space at the window. The fireworks had begun. I sat with them (no point taking them back to bed like that) petting and calming them for about 15 minutes until the fireworks were over (it was just a neighbour after all, and firecrackers are expensive) then we went back to bed and slept until 9am. I was thankful my girls allowed me the extra rest, for normally we are up so I can feed them and let them out sometime between 7:30 and 8:30am.

I got through their routine, then went through mine: breakfast, tea, surveys and such on Swagbucks, read the news, go through my emails, read through my news feed on Facebook… I haven’t done my ‘lessons’ in a while. No routine seems to last long, even when I enjoy it. It was 11 before I was finished all of that, and then I watched an episode of ‘Angel’ on Netflix while I was waiting for lunchtime to come.

Lunch was eaten, and it was just after noon when I started my Sims game. I have mentioned in the past how much I love Sims, but I haven’t played much in a while as it started freezing up on my old computer, and then I started having all those issues with that computer, and didn’t play at all.

Since this game was on my new (to me) computer, the house and family I built in my last game didn’t transfer over, and I had to start new. I do get attached to ‘my family’ in Sims, and was disappointed when I learned I couldn’t ‘bring them with me’, but I really enjoy building my houses and creating and naming my family as well.

As I said, I started at noon. For the next nine hours I was completely fixated, and was only (with much difficulty) able to tear myself away to walk, feed, and take my girls outside, and to get my own supper. Even at 9pm, I didn’t want to stop playing, and felt the tug back to the game through the night and until the morning when I was able to start playing again.

That was how I spent my New Years. Though I had to start again, it isn’t even a new game. I have been playing Sims since long before I lost ‘my’ foster children – so at least 7 or 8 years – and I always get fixated for days, weeks, even months at a time where it is pretty much all I can think of.

One thing I did notice especially this time was how when creating my family (on Sims 2 pets for the PC at least, because I am allowed a large family there) is that I always include extra adults to help with the care of the children. Always. I know that if those extra adults aren’t there, I have no hope in properly caring for the children, and I will be completely overwhelmed by the game.

I know this for the Sims. Yet when I had my three very high needs foster children, plus my autistic son to raise, I pretty much tried to do it all myself. Sure I had my husband, but he was away at work full time, so basically I just had him read stories to the children as I bathed the girls (separately) and put them to bed. I also flew my mom in to help for a couple of months a year – but most of the time I was alone, and overwhelmed.

What I needed, I think, was not to lose the children but instead to have a larger group of people caring for them. With the ministry, they believe that having more people caring for the children meant having the children taken to respite and school, and daycare, and other places outside of the home. But I think it is better the way I have it set up in Sims – where the ‘extra’ caregivers are family who all live in the same home. Seamless. When a need arises, it is met, and no one is ever on their own with the children.

True, the Sims world moves fast. Much faster than what happens in real life, or so it would seem. But time does move fast for me. So fast, in fact, that it feels like it is moving as fast as it does in the game (and at least in the game I can, and do, pause often to figure out the next moves so all needs are met.)

In life, I am nearly always overwhelmed, even when I have nothing pressing to do. I can’t help but wonder, however, if I could have been successful in the adoption of ‘my’ children if I too could have had a large built in extended family here to help.

I guess I will never know – but I think the way we do it here in North America, where most families – and most mothers especially – are pretty much doing it alone is a recipe for failure. Perhaps the solution isn’t to take, or send out, or struggle alone with the children, but to build larger extended families with lots of support, where no one is ever alone with the kids.

This from an extreme introvert, autistic person who works best on her own.

welland

 

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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.

 

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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: Struggles With Peopling

On Christmas day this year, my husband and I were invited to sing Christmas carols for a church service in the retirement home where his sister-in-law works. This is something that my husband does a couple of Sundays every month (though in different retirement homes) but not really something that I do. I like to sing, but I am not really good at it (I struggle with auditory processing, which seems to be getting worse as I age, and though my hearing is good I don’t ‘hear’ well in groups – which means I can’t hear myself to ensure I have the correct tune.)

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Thankfully my cold, which had already lasted for two weeks, seemed to be over. My throat was raw from coughing so much for so long, but I felt okay. This was good as the sign on the door said anyone having cold or flu symptoms was not allowed in – it made sense.

So I walked in with my husband, feeling very conspicuous, as I always do when walking in front of people. I was carrying my husband’s guitar for him, as he had books and other things to bring in as well. My sister-in-law wished me a Merry Christmas, gave me a hug, and asked how my new dog was doing. Then I followed my husband into the room.

I held his guitar for a while until he directed me to where I could put it down, and then I just stood there, not knowing what to do, as he got organized. After several minutes of standing awkwardly, I said to him, “I don’t know what I am doing,” so he told me I could sit in one of the chairs in front of us. “We’ll be front row people,” he said. So I sat.

My husband’s brother, and two of his adult nieces came in after that. They all wished me a Merry Christmas, and asked about my dogs. (At least they know where my interests lie! I probably wouldn’t have been able to talk about anything else.)

The room was full of seniors. Like babies, seniors don’t cause me the same level of anxiety. After a point in people’s lives, many people seem to lose that… maybe demanding, judgmental, competitive nature (or whatever it is that causes me to fear even people I have never met) and become almost harmless once more. I am still very anxious if I have to interact with them, it is just that being near to them isn’t as hard.

My husband talked a little, and then played his guitar and sang. His brother and nieces stood up at the front and sang as well (his sister-in-law was working, and had to be with the residents.) I stayed in my seat to sing, for that is where I was told to go. I am not sure if he meant that I should stay there the whole time, or if I was supposed to get up to sing with the rest of them – but there I was directed, and there I stayed.

After several songs, my husband’s brother spoke of the birth of Jesus, and how there would be no Easter without Christmas. When he was finished, we sang again. Up to that point, I was doing okay.

And then we were supposed to visit.

My husband and his family went off and ‘mingled.’ They are good at that sort of thing, but it meant I was left alone where I was sitting, trying to force myself to get up as well. A man sitting two seats over from me with his wife came over to me and started talking. He had lots to say, and used questions to get me talking, and still I felt very awkward.

He knew my husband from the thrift store where my husband works, and asked me if I was involved in the community. “A little,” I said, thinking of church and life group. Not much really.

“You must have children at home,” he said.

“Well, I have a son. He is twenty,” I replied.

Twenty!!!” he said in shock. “How is it you have a twenty year old? What is your secret to staying so young?”

My husband is twenty-four years older than me, and his brother and sister-in-law are only a few years younger than him. I understood the question, but didn’t know how to answer without sharing my entire life story.

“I don’t know,” I said awkwardly.

He kept trying to keep the conversation going, but I am horrible with that. Thankfully that is when my husband came back, and started to talk to the man. But, as tends to happen to me, at that moment I started coughing uncontrollably. I just could not stop. That was something that used to happen to me every time I was called to talk in grade school, and even something that happened a lot when I was working front desk at the motel… I feel really anxious and awkward about talking, and start coughing uncontrollably.

As I was coughing, I worried that they would think I had gone in there sick. It might have been aggravated by the raw throat I had as a leftover from my cold, but mostly I think it was just the fact that I had been required to visit. Too much talking mixed with too much anxiety. It doesn’t do well for me.

Since I couldn’t stop coughing, my husband decided it was time for us to leave – and I did; coughing all the way.

 

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