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Tag Archives: autism low functioning

Autism: Smoke and Panic

The last couple of logs that I put into the fire in the morning didn’t burn well. While I was making supper, I kept smelling smoke. Finally I figured out that it was from the logs (our fireplace doesn’t tend to smoke, so this was highly unusual.) So I moved the logs around, but the upstairs was still all smoky.

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My husband looked into the fireplace when he got home, but didn’t see anything wrong.

I guess the bigger challenge was that I had only just realized that our wired in smoke alarms weren’t working (I wonder how long ago that started!) We didn’t even have backup battery operated ones that worked, so my anxiety was very high.

After all, I have known a few people whose houses have burnt down. My grandmother was one of them, and though the people were all out of the house at the time, she lost all 5 of her cats in the fire, and burned her hand when she tried to open the door to get them out (she was just arriving home when she saw the fire.)

If my animals died in a fire, it would be a trauma I would not overcome. It would hurt me for the rest of my life. This I know.

Well, the smoke filled the upstairs enough that it aggravated my throat through the night. That, mixed with my panic about the smoke alarms, set me into a panic that made it very difficult to get to sleep.

It was about 1am before I slept, and has been happening for about 2 months now, I woke up at 3:45 am unable to get back to sleep.

Though I am sleeping little, doing little, and functioning very slow, the days are flying by.

I feel detached from the world, and disoriented from the speed – like the roundabouts they used to have in the playgrounds when I was a kid (before they regulated the speed they were able to spin.) I feel like I am watching the world spin and waiting for my opportunity to jump on – but it is too fast, and I get dizzy just watching it.

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Autism: To Dream Again

This morning was “The Summit” church service at the wharf – were once a year all three campuses and five services of our church get together for church, worship, and lunch after.

It rained a lot yesterday – which is kind of a big deal since we had a drought all summer with only half an hour of rain in about 2.5 months. Today was sunny and the skies were clear (which also hasn’t happened for much of the summer.) It was a nice day for outdoor church.

While I was there I once again noted something that surprised me. I was watching the parents with young children, and the older children at the awkward stage, and was surprised once more to acknowledge that I don’t want children.

Stressful, exhausting, difficult…

It is a foreign concept to me to not want children. Until a little over a year ago, even after years of infertility and a traumatic failed adoption, having children of my own was the main desire of my heart – even though I did have, and raise, and still have, my now adult son.

I would see other parents with their children and felt… envy, and sadness, and… lost, alone, forgotten. Other people had families – why couldn’t I?

It was another, and a major, characteristic that separated me from them – and I hated that separation. I still hate it, maybe, but at least I can see what I couldn’t see then: Children are overwhelming.

Beautiful, and fun, and worth the effort? Yes – but…

Children call attention to their parents. Always. You see the children, you see the parents – and there is advice, and there is judgement, and there is a lot of stress that comes with the job.

And I can’t be watched.

As I sat watching the parents dealing with the children I remembered that. I can’t be watched, and children call attention to their parents. Always.

I can’t be watched, for when I am watched I operate from a different part of my brain which significantly drops my functioning level to the point where I pretty much always fail. So having children – no matter how much I wanted them and loved them (and I did) – was a recipe for failure. There was no way beyond it for I can’t function when I am watched, and parents are always being watched.

As I began to accept this revelation – which has come to me in the past, but I always fought against (“if I could only try harder, or do things different, or research more, or… maybe I could” – but no, I can’t function when I am watched, and whatever else a parent faces in raising a child, they are always watched – and if they don’t want to be watched, there must be something really wrong with them, and they shouldn’t be trusted with their children to begin with; right?)

As I began to accept this revelation I began to realize that if it weren’t for the memory of the trauma of losing ‘my’ children, and without the fixation of a lifetime of wanting children (possibly because that, in my eyes, was the measure of success and ‘normalcy’ – to be a ‘good parent’) I might even be able to admit that I am happier and calmer with my life as it is now.

The traumas are there, and they do cause me to struggle a lot of the time – but this thought that I could live okay without children… it is mind blowing. It is to turn completely in the other direction, and accept that it might be possible to dream again.

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Autism: Learning to Can Part 1

It started out with plums. Lots of plums. Our tree was full this year and… I had to start somewhere, so – plums!

The pressure canner I ordered back in August never came in. I waited and waited, and then went camping – but my son was still home and he watched for it. It was in Edmonton, and was supposed to arrive here the next day, but never came.

Did someone steal it? Ugh people!

It isn’t like we live in a poor neighbourhood. We likely live in one of (if not the) oldest and least expensive homes in our area. We are surrounded by doctors, teachers, nurses, business owners… We may not have much, but the people around us do – so if it got here and they stole it??? I don’t understand that.

Perhaps it never made it this far – but then… it was fed ex that had it (I think; might have been Purolator.) Did one of their workers take it?

So I got back from vacation and was stressed out to find it had not come in. I emailed Amazon about it, and they said they would send another. Then I learned of ‘my baby,’ and everything else dimmed in comparison. I struggled for many days and then one day woke up deciding this was the day I would harvest plums and try canning for the first time.

I guess when most other people learn such things they turn to people who know what they are doing and learn from them. That isn’t me. Working with other people presses on my heart and mind that I am not good enough. I don’t belong. They may not be thinking the same thing; I will allow for that. When I am with other people, however, I get attacked – in my head, in my heart, all around me – and I just can’t.

Though I am sure most other people don’t understand this level of anxiety or isolation, I am sure that if they experienced anything similar – like perhaps they received an electric shock every time they got something right, they would be afraid to keep going, too. Not that I get shocked – but it is like that. I get attacked through thoughts and feelings. It makes it so hard to function that when other people are around, I really can’t function. Not won’t. Can’t. I drop things, I spill things, I make mistakes. I can’t think for the shouting in my head (that I am working so hard to silence) telling me how stupid I am to think I belong there, or could do… anything.

So I don’t. Other people work, and serve, and do things with other people – and when I am there, I sit, or I try to hide in a corner and become invisible.

It has to be this way, it seems, for I am not strong enough to silence the attacks – and the attacks always come.

This means that if I want to learn anything, really, I have to learn alone. I seek out ideas, research, study, spend an inordinate amount of time fixated on the subject, and then one day I will just try.

Well, knowing I was interested in canning, my husband brought a huge water bath canner home from the thrift store where he works. I mean, it was huge! It took up two burners on the stove. I had all these plums, so that is where I started. Over a couple of days I made 24 jars of canned plums (and got at least that amount again in fresh plums, some of which we brought to my husband’s work and gave away.

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Autism: Something to Help

The thing is, I have been super panicky for close to three weeks now.

I keep thinking: if I just get caught up on my blog posts; get the housework done; clean up the yard; get rid of the clutter; find some purpose… then I will calm down.

And I go to do… whatever, and I start of okay, but very quickly grow overwhelmed because, well… I am panicky. So I get a little bit done for the day, and can’t do anymore – which of course feeds my guilt.

So I look around, completely hating myself because other people (all around me) get these things done. And here I am – no job, no children, hardly any social life to speak of – maybe just among the least obligated people I know; and I am so overwhelmed, I am in shut down mode just about all the time.

I have crashed so frequently in the afternoons that my dogs now come to me early every afternoon begging for ‘nap time,’ because… I don’t remember the last time I didn’t go in my room for a nap – and even then the panic won’t let up enough for me to sleep most of the time. And when I have gotten to sleep in the afternoon, I just wake up feeling worse.

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In determination I walk over to my computer, completely convinced that I will get my blog posts written this time. I sit down, and am again overwhelmed by the anxiety, and instead go on a Netflix binge watch – because my mind won’t settle enough to think.

Trying…? Not the best solution to this. The harder I try, the more incompetent I feel, the more I panic. In fact, the panic grows the moment I try – before I have even failed yet.

So I ask myself what it will take to get through it this time.

For this is not the first unexplained severe anxiety episode I have experienced. Sometimes it lasts hours, sometimes it lasts months. While I am in it, my functioning is drastically reduced. I feel… scattered. I worry about my sanity. How long can one person’s mind endure such levels of fear before it breaks?

And I think that the hardest part is, I don’t even know why I am so anxious. I just want it to end.

Feeding into this anxiety is night after night of very vivid dreams in which I am trying to repair some situation in my past – and I wake up not quite oriented to the world I now find myself, saying, “yes, please let me do that.” And day by day the panic grows.

I suppose that since I am so badly effected by all anti-depressant/anti-psychotic/anti-whatever medications – not just with bad side effects, but the fact that they have the opposite effect on me to begin with – that I will just have to endure it. I just wish I could find something that would help.

 

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Autism: Early Wake Up Call

It was 6am when I heard the door to his room open. He walked down the hallway and started doing things in the kitchen: Opening and closing cupboard doors. Using the microwave. Opening the back door for the cat. Walking around. Doing things.

I tried to get back to sleep, but he was so loud.

Okay – I admit now that he wasn’t any louder than he usually is, and he is usually a pretty quiet person, but… when I am supposed to be sleeping? Everything is loud. It was loud to me, though he might not have thought so.

Anyway, once I am woken up, it is rare for me to get back to sleep. Only if there was silence – but he had things to do. Only if there was time – but it was only an hour until my girls got up, and the time went fast while I was waiting for him to stop moving.

Molly even protested when I said I was going to get up. “Too early, Mom,” she seemed to say as her eyes – heavy with sleep – closed once more.

Too early. I agree.

But I couldn’t get back to sleep, and that meant a hard day ahead.

I tried to see it from his perspective – he had somewhere he had to go before work, and so had to leave early, and so had to get ready early – but I needed that sleep.

He had to work all day – just like he did the night we picked my mom up at the airport and didn’t get home until nearly 1am (I was really tired that day, too.)

I didn’t have to work. But it still made me sick all day.

It was only one hour less of sleep, and sometimes that happens just because my medications don’t work some nights, and without them I have insomnia. It isn’t unusual for me to struggle with sleep.

Yet every time I struggle with sleep, I have a bad day the next day. It leaves me nauseous, and uncomfortable, and head-achy, and even all my muscles ache from the lack of sleep. I can’t think well. I can’t function well. I can’t even visit well (“Sorry mom!”)

I know he didn’t mean to wake me up. He probably didn’t even know he did (he rarely seems to notice that he woke me up – mostly, I assume, because once I do wake up it takes me another 30 minutes to an hour to actually get out of bed.

I also know that I often struggle with this on my own.

But it affects me so much – why doesn’t it seem to affect other people the same? I mean, sure it “catches up with them,” but with 6 hours of sleep in a night (it takes me two hours to settle in bed, reading and such, and another two to get to sleep – so it is unreasonable for me to try to get to sleep before midnight to avoid this problem) I can’t even function the next day. I am pretty sure most people don’t have that.

Since it causes such struggle, and I have enough bad days on my own, I really need to not be woken up. I have no idea how to solve that issue except to pray he sleeps longer than I do (which is unlikely, since it takes him 5 minutes to get to sleep, I can’t even start to go to sleep before him, and he doesn’t seem to need as much sleep as me.)

What to do.

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Autism: One Event

About five days ago now, as I was struggling after the Handy Dart bus I had booked to bring me home last Thursday didn’t show, I got a phone call.

For a long time I haven’t been answering the phone when it rings. Not only do phones make me anxious from the moment they begin ringing, but our corded phone was in the dining room, and Molly – the elder of my two Chihuahuas is nearly always sleeping on my lap when I am sitting down. To get to the phone on time, I have to get up quickly (without dropping her) and run through a near obstacle course of furniture to get to the phone before the answering machine picks up.

I almost always miss – and when I don’t, it is almost always telemarketers, making me wish I had missed.

On the Thursday in question, however, I had finally broken down and purchased a cordless phone set with gift cards I have been saving up over the past couple of Christmases. The one cordless phone/answering machine combo we do have is 17 years old. We replaced the batteries on the phone at some point, but it stopped working a couple of years ago.

While I was running my daycare, I did buy another set of cordless phones, several years newer than our combo, but I could never hear people talking to me on it. For that reason, I avoided purchasing more for a long time.

I have been leaning towards trying it out again, with the help of my gift cards, for several months. The reason for this is: 1) our corded phone is in the dining room, with only a hard dining chair to sit on. I don’t talk often, but when my mom calls, we will often talk for hours (since it is years between visits, and months between calls.) and 2) my finicky cat decided that our dining room was her new bathroom, and we had no choice but to put the litter box in there – which sits beside the corded phone.

We do have three more phone jacks in the house. One is in my husband’s bedroom, where I don’t exactly want to talk on the phone. The other two are in my son’s suite.

So I got a set of cordless phones with an answering machine and call display. Since the second phone doesn’t need a jack, I plugged it in beside my chair in the living room. I can now look at who is calling, decide to answer, and pick up – all without dropping Molly off of my lap. I still get anxious, but it is better.

All that to explain what happened on the day in question.

I was anxious, depressed, and feeling quite powerless that Friday – because the bus I booked never showed up. I was crying a lot, and feeling quite sorry for myself. Suddenly the phone rang, and though I didn’t recognize the name, I saw it was some doctor’s office, so I answered.

It was to book an appointment for me to see a nerve specialist for troubles with numbness and tingling in my hands, feet, and face – which I went to my GP about early last fall. It took me completely by surprise, as this is the first I have heard back from them, and they booked the appointment for not two weeks into the future.

The difficulty is that I have to drive to a city 45 minutes away for this appointment, and already I am severely anxious and struggling to function over the missed bus. I hate driving, and I really, really don’t want to go.

As you might be able to tell from this post, my brain has been scattered since. I mean… I guess I am glad that I answered the phone that day, for phoning back would have been harder on me – so the whole story about why I bought the phone maybe isn’t that important to the post, but…

All of this to share how one thing can lead to days, or even weeks of low functioning for me. One bus that didn’t show. One phone call. One appointment two weeks away. One… and during that time, I can’t do anything but wait for it to be over.

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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

 

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