RSS

Tag Archives: autism shut down

Autism: Independent Living

While I have not been posting on my blog site often in recent months, it isn’t as if I have stopped writing altogether (as if that would ever be possible!)

Several months ago, right after I had struggled in getting my vision testing done, I did a Google search on what to do when vision testing doesn’t work for you.  I came up with the site “Quora,” and have been answering questions on there ever since.

For example, the question from this morning was:  “Can adults with Autism live independently without support?”

So I answered it:

Some might be able to. It really depends on many factors.

I, for instance, am what would be considered to be “high-functioning.” I have an average or above IQ, am (sometimes) verbal, can read, write, completed college with honours, have held a job for months, even years at a time…

But…

I have a tendency to panic attacks, am prone to depression, struggle with time management (time seems to go too fast for me, and I move to slow in it, so working more than a couple of days a week is too much for me and I can’t live outside of that.) I get burnt out easily, and shut down when I am overwhelmed.

When I lived on my own, I could never make enough to pay all of my bills. I wasn’t out spending money on things I didn’t need, but still ended up frequently short on money. Not enough for rent, hydro, gas, other bills. I couldn’t do it.

Also I struggle with abstracts – and thoughts of the future are pretty much entirely abstract. For example, I moved across the country, after completing my Early Childhood Education (with honours), to open a home daycare in a community that needed daycare.

My view was that I was allowed to care for 7 children, including my own. (5 under 5.) So even if I only filled those 4 spaces left for young children, I would have no trouble paying my bills. I took out a loan, moved across the country (fully expecting I would have no trouble flying home a couple of times a year to see my family) and opened my daycare.

What I could not see was that most of the care I would provide would be part time. Those 4 spaces would be filled by 10 children – and frequently I would be juggling and having to communicate to the parents in order to never go over 4 children at a time. Communication was hard. Getting enough income to pay the bills was very hard. Working full time to try and make enough to live was exhausting.

I couldn’t continue long term, ended up NOT being able to pay my bills, struggling to get money to eat, having my gas shut off, defaulting on my loans, and having to claim bankruptcy. NOT because I was out spending money on things I didn’t need, but because no matter how hard I tried (and 20 years later, this is still very true) I could not make enough to deal with everything.

In fact, trying to deal with everything a home requires to run (even excluding money – which had I been diagnosed, and been put on disability, I might have been able to manage) is so overwhelming that my brain shuts down (like an overloaded circuit breaker.)

Running a daycare was not the only factor in my inability to live independently. I also tried working in construction, and working in a small motel. Even in jobs I really liked, and could work at part time, I would become so panicky I couldn’t keep going. I am now at home on disability, as that issue became worse the more I tried, not better.

I am married now, and my husband works and takes care of the bills. He also helps me to socialize, and does the majority of the driving (even though I do drive, the unpredictability of other drivers and pedestrians causes me to panic and become exhausted too fast to actually get much done once I reach my destination.)

Maybe if I had a good level of disability payment support, and lived in a place where I was walking distance to most things I needed (groceries, church, etc.) and was on a very good bus route to anywhere else I might need to get to, I might be able to live independently. As it is, even as a high functioning adult with Autism/Aspergers, I can’t do it.

Easter 2015

Advertisements
 

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

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.

DSC02522

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?

 

Tags: , , , , , , , ,

Autism: When Bad Things Happen

“The more you experience something, the more you will realize that nothing bad is going to happen.”

Only bad things do happen. They do. And my anxiety, and my depression stem from bad things that DID in fact happen. Maybe that isn’t true for everyone – or at least it seems doctors and counsellors are trained to respond as if our fears are ungrounded – but it is true for me.

So in spite of the strong anxiety, I did try.

I picked up the phone, with my heart thumping. I dialed the number, and got… a busy signal. For the next hour and a half, I pressed redial on my phone every minute or so, and every time my anxiety increased. So I gave up.

I emailed instead, asking if it was normal for the phone line to be busy for so long. I just can’t do that every time I need to call. Phones are hard to begin with, but when I get up the courage to pick up the phone, I need it to go through. I have been rehearsing what to say in my mind, and am never more ready than in that moment to speak.

The busy signal throws me off, so if someone does answer after, I stumble over my words, and feel like… well, “idiot” is the word that comes into my head over and over, as in, “I am such an…” I should probably work on that. Humiliated, I guess, is how I really feel. Messed up again. Can’t get anything right.

“Their phone line is down this morning, and they haven’t been able to make or receive any calls,” was the reply. Okay. So not typical. I can try again.

They called me when their line was fixed, and I booked the ride a little over a week in advance. With high anxiety, I went down with my husband on his way to work, did what I needed to in town, and waited for the bus to pick me up and take me home. I was an hour early for pick up, but got picked up on time, and was home in 15 minutes.

“Okay,” I said to myself, “maybe I can do this.”

So a couple of weeks later when my son asked to go downtown, I said I would book the bus (this isn’t a fixed route bus, but a direct route bus for people with special needs.)

I was really anxious, because this time I had to not only book the trip, but ask if my son could come with me. I made the call, and they answered right away this time. I mentioned my son, and asked if he could use the tickets (which say on them only to be used by registered handy dart users.) They told me they would put him down as my ‘attendant’ and he would be free. “Is that okay?” I asked, “I could just give another ticket.” “It is perfectly okay,” they responded.

I told them where I wanted to be picked up, and that I already had a ride into town, I just needed to get home. Having OCD on top of my autism, I said it several times to make sure they got it. Then I hung up, feeling good (as if I had just climbed a mountain or something.)

My son and I went down with my husband on his way to work. We did what we needed to do in town, and were 45 minutes early getting outside to wait for the bus. Coming close to pickup time, we walked closer to where the bus would stop (I knew because that is where they picked me up last time.)

A man started smoking beside us. I said, “Uh-oh” as he pulled out his smokes, and I got up and started walking away. Bad smells. Bad. It was hard to get away from, though we were outside. It was as if the smoke followed and circled me, and I couldn’t get away from it. Finally I found a space with ‘clean’ air, and stayed there.

I looked at my watch. It was time. My heart was racing. The bus wasn’t there.

As the minutes ticked by, my anxiety grew to panic. Looking at me, my son laughed a little and said, “this is why you qualify.” (I have had quite a bit of trouble understanding why I qualified for the special bus for handicapped people, and feeling as if I needed to defend my need to use it.)

Finally about 25 minutes after the bus was supposed to be there, my son started to believe it wouldn’t be coming too. “I am going to cry,” I told him. “Go ahead,” he replied. And I did. The tears started falling, and wouldn’t stop – and there I was in a very busy place, with people walking past me every few seconds.

The bus never showed. For this trip, I had arranged pick up at the place where my husband works (I was trying to get used to taking the bus on easier trips, so I wouldn’t be so anxious when I had to book for appointments and such…)

“Just take the van home,” my husband told me. “But I can’t! I am so anxious I can’t think. I can’t drive!” Can’t. I was in full meltdown/shutdown mode. So he waited for a coworker to get back, and then left work to drive me home himself. He is not supposed to leave work like that, but I needed him. Not only could I not function to drive home, but that would have meant having to go out again to pick him up in the evening (bad enough on a regular day, but on that particular day, he had to work late, wasn’t sure when he was finishing, and I was in a bad enough meltdown it wasn’t likely to let up in a matter of hours.)

“Try it and you will see that nothing bad will happen,” they tell me. But bad things do happen. I booked the bus. I did everything right. The bus didn’t show up, and I was stuck. Bad. Bad things do happen to me, and that is why I am so anxious all the time.

The tears kept flowing all that day. My head hurt so bad. The next morning I got up the courage to phone them and find out what happened. “Sorry, it was my fault” the person said, “I wrote down you wanted to be picked up at your house.”

I am not mad, but I do feel powerless, and I am very afraid that if I try again I will be trapped somewhere and have no way home. Bad things happen, they just do. And it isn’t just the bus that didn’t show – but the humiliation of having a public meltdown; of not being able to function to improve the situation; of the fact that despite saying it several times to make sure they got it right, they still didn’t understand what I was saying.

Of being just special needs enough to qualify for the bus – but not special needs enough to have supports in place to ensure these things don’t happen, or that someone is with me to help me deal with them when I can’t. I cried most of the next day, too.

So, so hard to live well in this world.
Easter 2016

 

Tags: , , , , , , , ,

Autism: These Days

The days come upon me suddenly and unexpectedly. There is often no warning the night before that anything might be different when I wake up. It just happens. And if I have obligations that take me away from home, or people around who interrupt, it becomes more frustrating than I can express. It doesn’t even happen often, maybe only a couple of times a year; more if I am lucky. If I don’t, or can’t take advantage of it, the moment passes, and may not come again for months.

It happened this week. When I went to bed, I was extremely anxious and depressed. That is pretty common for me, but that night was worse than the few days on either side of it. It took me a while to cry myself to sleep, and even then, my rest was fitful.

I woke up at my normal time (well, normal now that my new dog chooses to wake me up to get outside, and have breakfast, where Gryff would wake my husband and let me sleep) and as I woke, I had a sudden desire to move things. That desire was so strong that before 9am, I was already in the basement trying to carry a dresser upstairs on my own – despite the fact that my son was still sleeping, and I knew he wouldn’t be pleased.

It wasn’t that I wanted to annoy him, but that I needed to move this dresser. The compulsion was so strong, that it drowned out all other thoughts. So I pulled out the drawers, emptied them, and carried them upstairs. Then I lifted the dresser to the stairs, where I slid it up the first flight, flipped it over, and slid it up the second. Of course, at that point, I had nowhere to put it, so I left it in the hallway.

The dresser was to go in ‘Finn’s’ room (the room my Siamese cat refused to leave for the first year after we got her.) But that room was being used for storage, and had the litter box, which had to go. What is the point in having a bedroom that can’t be used for guests due to a litter box? It didn’t make sense. It never really did, except when Finn lived in there. She has since migrated to the living room (of which, I am very pleased) and only went in there for that one reason.

That room was a mess, however, so I decided to start somewhere else. My husband didn’t like my dolls being displayed in our bedroom. He never said anything, but kind of hinted at it once about a year ago after I moved them in. They were on a set of cube shelves sitting on top of a vanity dresser with a mirror. So all of them were going out.

Down came all of the dolls, dusted and comforted (for being left on uncomfortable shelves… are they really happy there?) and put on my bed. But then, if they were going in the pink room, the entertainment shelf had to be moved. Out came all of the movies and DVD s, and piled on the bed and floor. The keyboard, chair, and stand also needed to be moved. Off they went to the side of the bed. The entertainment shelf wouldn’t move still, so out came more. I had to be able to lift it – why did I have to put carpet under it anyway?

014

Finally I got that out, but the mirrored vanity was even heavier, and wouldn’t go over the carpet. This I knew. So I flipped the carpet around while still under the queen sized bed, so there would be more room to move in the vanity without running over the rug. The entertainment unit was stored in my bedroom, at the end of my bed, as I moved the vanity into the pink room, and put the cube shelves back on top.

Of course, then I had to work at putting everything away again (while talking to my dolls – ‘do you want to sit with him?’ ‘did you like Winnie the Pooh, or did you prefer Mickey Mouse?’ ‘I am sorry, Moose, you have to go on the top shelf. I know, but you will have the Reindeer to keep you company.’…)

My son came up while everything was all over the place, as if an explosion had gone off. “What are you doing now?” he asked me (as if he were the parent, and I was the child.)

“I am cleaning,” I said.

“You are making a mess,” he replied. (What does he know, anyway? He doesn’t even like my dog…)

Well, those rooms got put back together again, with several hours of work, and I still had that overwhelming determination to clean out ‘Finn’s’ room and move the litter box

Poor Clara was stressed out, and peed on the carpet in front of me. Poor girl. I moved all the storage downstairs to the ‘playroom’ (which is now really where we keep the good TV that mostly my son uses – he wasn’t too pleased about the mess in there, either.) I moved the litter box to the main bathroom, where there is a large open area under the counter, and then I washed the rugs in both that room, and the ‘Pink’ room.

After cleaning the bathroom, I finally sat down. It was 4pm, and I had started at 8:45 that morning. That may not seem much to many people, but as I said it rarely happens for me. Not only don’t I have the energy most of the time, but I almost always shut down for being overwhelmed shortly after starting. Then these things bother me, and I carry them like a weight, until I get to days like these, and can finally relieve the burden. I am so thankful to have the freedom to plan my own time that I was able to get this done the very moment I was inspired to – for otherwise, it might never have been done at all.

 

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

 
%d bloggers like this: