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Autism: Horrible Stinky Food

My husband made hamburgers for himself in the toaster for supper. I did notice he was going to do that, but he doesn’t like me to comment on these things, and… what was I supposed to do?

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On the nights that he cooks, I frequently have to wait until supper is finished for him and my son before I can start to make my own – and that in itself is very hard on my system. That isn’t his fault – I just can’t function well with anyone around, including my husband. I do okay with my son there, but my son has been there since he was a baby, and that is not true of anyone else in my life – which is maybe why my son is the only one who doesn’t have such an effect on me.

Oh – I guess I should mention that I am the only one in my house who doesn’t eat meat. I also have a lot… a LOT!!! of sensory issues around food, so what people typically eat (in Canada – but I imagine many foreign foods would be bad for me, too) is not only something I can’t eat, but something that causes me a lot of struggle when other people eat these foods around me.

Hamburgers are one of those foods.

If they are cooked on the barbeque, and the doors are closed, it isn’t so bad. The smell goes away pretty fast, and I can cover my nose while I wait.

Inside, however, is very different.

It stunk up the house so bad I couldn’t block it out with three layers of blankets. My husband, seeing my distress, sprayed room freshener (which made it worse) burned candles, and opened the windows. It still took more than 1.5 hours before I could take the blankets away from my nose.

Molly, (one of my Chihuahuas) stressed out by my struggle, barked at my husband (which she doesn’t do) until I brought her to me and calmed her down.

My functioning, reduced to nothing since I was unable to eat my supper due to my husband’s choice of his (and I begin crashing when my meals or snacks even are even a few minutes late – and this was getting close to 2 hours) left me unable to find food even when the smell had cleared, and my husband had cleaned the kitchen.

Knowing it was nearly time to get my girls ready for bed, and I had to do something, I walked into the kitchen – but I ended up rocking on the floor unable to think. Clara (one of my dogs) and Ditch (one of my cats) came to help comfort me.

I couldn’t deal with my needs, but they needed me, so I got up and got them through their bedtime routine.

I ended up eating a granola bar (which hurt my tongue) two pieces of dried mango, and the tea that my husband brought to me. It wasn’t nearly enough. Not nearly. But it was close to 10pm, and was too late for me to eat – besides, I still couldn’t think of food.

For me, it isn’t true that I “will eat when (I’m) hungry enough.” The truth is, the hungrier I am, the harder it is for me to eat. Even foods that usually work for me are rejected (in my thoughts as well as my mouth, throat, and stomach) when I am too hungry. Foods that are often okay for me frequently cause a very bad reaction if I eat them in those moments.

So I went to bed feeling hungry and weak. I woke up the next morning (having only made it through the night by medicating myself) feeling hungry, nauseous, and weak. In fact, though I did eat that day, it still took me until after I had eaten supper and dessert – a full 24 hours after the issue began – before my body was regulated and felt okay again.

It is really hard on both me and those who live with me when normal things that they do has such a bad effect on me – and what am I supposed to do with that?

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Autism: Give Me An Out

I woke up with such a bad headache (this has been happening a lot lately) that I didn’t think I should go to church, but it dulled as the morning went on – and really, I would rather go than not, even when I don’t feel like it.

When we get to church, we often say “hello” to a few people, get our sermon notes, and go to our seats. While my husband might stop to visit, that part of the church at that time very quickly puts me in sensory overload.

  • The fan running above me.
  • The doors opening and closing.
  • People all around me.
  • Open spaces.
  • Lots of voices.
  • Children running around.
  • Sights, smells, sounds… it is all just too much.

And when I have to stand in there – which is true of any such space (I hate being in warehouse stores for these reasons even more) – I quickly start going into meltdown mode.

Mostly my husband recognizes this and gives me an ‘out.’ He might stay, but I am able to comfortably excuse myself and go.

Perhaps on this occasion it slipped his mind how hard this was for me. Maybe he thought he would only talk for a moment, and it would be okay. Possibly it was because on this Sunday there were fewer people in the foyer when we got there.

Easter 2015

Whatever his reason, I found myself ‘trapped’ there in that foyer with no polite way I could find to excuse myself. We stopped to say “hello” to one couple, and he ended up staying to tell a long story about how his jaw was broken. To include me, I suppose, they kept looking at me while he told the story, and I couldn’t get away.

It wasn’t about his story, or about the couple we were talking to (or he was, anyway.) In that type of situation I am being bombarded by all sorts of sensory stimuli, and I can’t block it out. It was all I could do to try and hide how irritated I was getting.

Finally the story was over, and we started to walk away. I thought I might be okay, though I was still struggling. We only took a few steps, however, before he stopped to talk to someone we didn’t know.

She had just moved to town a few months ago, and was new to the church. My husband was trying to make her feel welcome. I know we are supposed to do that, and I saw the value in it as he was speaking, but… I was already doing pretty bad, and wasn’t able to handle any more.

I know that I didn’t do as good a job of hiding my irritation – and again, it wasn’t about what my husband was saying, or about the person he was talking to. I was feeling trapped and overwhelmed, and could find no polite way to escape.

So the irritation, I am sure, showed loud and clear. I was crossing my arms and hugging myself as I do when I feel that way. I was looking away, trying to block things out, shifting from one foot to another… I am sure it didn’t help her to feel welcome, but it certainly wasn’t my intention to come across that way.

Really, it was all I could do not to go into full meltdown, crying and running away, right then and there. Of course, she wouldn’t have known that. She wouldn’t have ‘known me from Adam,’ as they say (or should it be Eve???) and certainly wasn’t aware that I am Autistic. It isn’t like I have a neon sign on my forehead announcing that.

So instead of seeing that I was in sensory overload, and needed to get out of there, I am pretty sure that in her eyes, I just seemed rude.

Finally that conversation was over, and we went in to our seats – but I was crashing hard! My husband tried to talk to me about other things. He tried to hand me my sermon notes to read over. He tried. But I couldn’t. I was done. Like I said, it was all I could do not to cry and run away, and I was having such a hard time… I guess ‘regulating’ myself might be the right term.

Then the worship music came began, and the calm washed over me, and I was okay.

But I wish they understood how hard such things are for me and would always give me that ‘out’ I so need in these situations.

 

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Autism: Transitions are Hard

We had been there for a week, and it was time to go home.

Transitions are hard for me. Especially bigger transitions, like moving from comfort to discomfort. Okay, maybe that isn’t suggestive of a ‘bigger transition,’ but it sure feels that way to me.

I woke up knowing that we were leaving, and counting up all of the things that needed to be done. Very quickly I was becoming overwhelmed, and I hadn’t even opened my eyes.

“Never mind,” I thought to myself. “Block it out. You won’t have to do it alone.”

And that did help for a while.

We didn’t have a set time to be home, and though it was going to be a hot (and smoky from all the wildfires close by) ride home, we decided to wait until after lunch to leave. My husband and I planned to swim first – and my girls would have their ice packs in the crate with them as we travelled. Hopefully it wouldn’t be too unbearable.

We started packing up together, but then when I went down to start bringing things up from the ledge where our tent was set up, his cousin (second, I think) who was up with her friends started visiting him. I ended up having to bring everything up by myself after all.

And I had a bad back.

He knew that. It had been bothering me for many days. There were lots of reasons why my back hurt:

  • I had been picking my girls up out of their pen instead of using the door.
  • It had been a bad allergy season, and allergy medications leave me prone to back issues.
  • We were sleeping on the ground in a tent – and while we had foam mats, and a foamie to sleep on, I could still feel every bump and indentation below me, and had the bruises to prove it. I guess I am too old to sleep in a tent – but the campers were all taken.
  • I had been mainly sitting on benches without backs, and I really need the back support.

On top of that, I get really bad (scary) pains in my chest and arm when carrying things up and down hills – and when we arrived, he had also left me to carry everything down (I am sure he was doing something – probably watching my dogs or something as I asked him to, or unloading the food up above – but I needed his help and he wasn’t there.)

So I was upset. Of course I was upset.

“It wasn’t right that you left me to bring everything up by myself,” I told him.

He said he had been getting things in the top rack – but that was before I was bringing things up from the tent; while I was still packing things up above. The whole time I was bringing things up, he was talking to his cousin (who had offered to help, but ‘we were okay,’ and we were until they stopped him from working to visit, and I was left to do it alone.) Every time I came back up the hill, there he was, in the same place, talking.

And my back was hurting. And my chest and arm were in pain. And I was overheated, and exhausted, and overwhelmed. And melting down. He wasn’t there, and I needed him to be. My husband is a serving kind of person. He is there to help, well… always. It is what he does. So when I needed the help, and it was his work too, I counted on him being there. I expected his help. And so when he was distracted, and I had to do it all alone? It was all just too much for me.

I needed him there before I even began because transitions? Transitions are hard.

July 2017 008

 

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Autism: Like Losing My Children All Over Again

The week my mom left was an especially difficult time for me. It is so hard for my mind to understand the abstract nature of this world – such that, “my mom is gone; will I see her again; and… are my memories of yesterday(s) real?”

Above the difficulty I was having with her departure, I also happened to be reading a book that led me to question my faith. It wasn’t so much in belief, but in “faith without works is dead.” So I was overflowing with guilt and shame, regret, and fear that since I seem to fail at everything. Does this then mean I won’t have ‘works’ to show my faith is alive, and therefore God will reject me?

That same week, I must have been triggered by something (perhaps the dream in which I was trying to bring my children home,) for I was emotionally re-living the loss of my (foster) children, and the attack I had experienced at that time much like it was occurring again in the present time. My pastor says that the emotional receptors of the brain don’t understand time. Therefore, when a memory is triggered from something that was emotional (and that time in my life was very much so) it feels as if we are experiencing it again. Therefore the saying “Time will heal,” is not accurate.

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I tend to agree with him on that one, as it is certainly true for me. I frequently relive traumatic times in my life when memories are triggered, and it really hurts as badly now as it did then. I may not be living it every moment of every day as I did when it happened – but the pain is just as intense, and the hurt just as strong, as it was in those days.

And then I had another dream. And though the dream was extremely unlikely to be a subconscious reflection of reality; and though he has never given me any reason to believe this might be a possibility; and though I have not been suspicious, or jealous, or anything in our relationship – the dream still had a very strong impact on me.

In the dream, my husband was confessing to cheating on me continuously, and was mocking me for being upset, and for being too stupid to know he didn’t want our marriage to last.

It wasn’t even a very long dream, and when I woke up, while I still acknowledged such a thing to be extremely unlikely – emotionally I was aching, and responding to my husband as if it were true. I didn’t speak to him of this – it was a particularly ridiculous dream; yet perhaps if I had I would have been able to heal, and not fall apart in ways he couldn’t understand (not knowing where such things were coming from.)

It has been hard enough living with this idea that he doesn’t want me battling in my mind for several years – but to have this added to my mind: that he doesn’t want me because he has someone else (even if I know it to be untrue, and only the result of one nightmare) brought me to a certainty that he doesn’t love me, and doesn’t even want me around.

And while it was unfair to him, since it had nothing to do with his actions, and everything to do with my dream; I still responded to him as if it were truth – and it hurt. It really, really hurt. And he had no idea.

So he fed this belief he didn’t know I had, from a source fully outside of reality, by responding to my discussions about not being able to go to the lake since I had no solution for keeping my girls safe with (what appeared to me) indifference – and as if he really didn’t want me to go with him. And then he got my gloves wet, and I fell apart, and it was like…

It was like losing my children all over again.

 

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Autism: Wet Gloves

The idea was that I would go and and wash dishes while my tea was cooling, and then take my tea, and my girls outside, where we would enjoy the evening as we did most nights while my mom was here. I have to be able to make plans like this, and when those plans are disturbed, it affects me strongly.

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Affects me? Effects me? Whatever. The problem was wet gloves.

It may not seem like such a big deal to those who don’t understand, but for me to be able to wash my dishes, I have to use gloves. Dry gloves. For without gloves, or with gloves that water has gotten into, my hands literally feel like they are burning the entire time I am doing dishes, and for long after – like sticking my hands into acid, burning.

It is one of my major sensory issues – and one I work around by using gloves.

Well, it wasn’t my turn to cook yesterday, so I had to leave the kitchen for someone else to use (a very difficult thing in itself for me – and the only reason I go along with it is that when other people are here, I get paralyzed, and really struggle to make the meals at all.)

The meal that was made, was not something I would have made – and not one I like much as it is (though to be fair, most meals made here are not for me, since I am plant based, and the others aren’t.) In fact, this meal was one that only the person making it likes, and likes a lot. But it was messy, and used a lot of dishes, and… ended with water all over the counter, which got into my gloves, and brought me to tears as I set my tea down, and picked my gloves up to start on the dishes.

And suddenly everything was overwhelming, which brought me to a very teary meltdown.

Flipping rubber gloves inside out to dry the inside is not an easy thing to do, and not a fast thing to do, and I was very upset about my plans being altered (my necessary plans to get through the dishes which were overwhelming me to begin with.) As I was trying to flip them inside out, and they weren’t flipping well, I got frustrated, and cried out in that frustration as I shook the glove in the air to try and force the fingers out.

“What is going on?” he asked me.

“Someone put something wet on my gloves, and now they are wet inside,” I answered.

“Do you want a new pair,” he asked.

“This is my new pair,” I responded.

“Well, I am very sorry,” he told me.

Great. But do you understand? Do you know why this is so horrible for me? Can you even imagine? My tea is getting cold, and my girls are waiting for me, and I have all these horribly dirty dishes from a meal I didn’t even want that I have to wash by myself, and my hands are going to burn, and my mom is gone, and my children were taken, and…

Your response is telling me that you feel good about forgiving me for being so upset at something you did – and still you leave me to continue this activity that is now going to feel like I had my hands soaking in acid, or bleach because you didn’t think about my gloves being there on the counter (not even that close to the sink, and folded over to avoid getting water in them).

And I will be the one left with the shame of another thing that tells me I don’t deserve to be loved, and everything that goes wrong is my fault – even when it is something you did that hurt me.

And I just want to shout – “Don’t you think that maybe, this time, you are the one needing forgiveness?” And forgive you, I will – but please stop making me feel like I am horrible, and you are merciful, when you do something that causes me pain, and I feel the pain from it – how is that yours to forgive?

I realize it wasn’t done to hurt me. I realize that when you put the dishes there, or cut the vegetables there, or did whatever you did that got the inside of my gloves wet – it was more that the thought of the gloves getting wet never crossed your mind, than that you did it to hurt me, but…

I can also say that, though I have hurt many people in my life, and though sometimes that was a direct consequence of something I did – I never did it to hurt them, either.

I may fail more often than others, and I may hurt people more often than others (it seems my very presence often causes people more pain than they would have had without me) but I don’t think that should bring us to the point where I should apologize when you hurt me.

And I just want you to understand that things that might not seem like much to you, can cause huge amounts of pain and distress for me – and I am not wrong, or unreasonable to feel it.

 

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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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Autism: Fatal Flaws

This morning I am panicking, and I don’t even know why. I have nowhere to go. I did my cleaning yesterday, so don’t have anything today that must be done. My animals are healthy. My environment is tidy. Though I am not working at this time, I have enough to live on. Christmas is coming, but there is still time – nearly a month as I write this. I haven’t had recent social interaction that I am pulling apart and analyzing. Yet I am really anxious today.

I have been for quite a while in fact. Sick (nauseous), achy, exhausted, anxious, and not doing all those things that help me to feel better – like my lessons. Last week, Thursday I think, I did my devotional and about 1/3 of the final review lesson in Latin. It had been about two weeks since I had done any at all. I have felt too busy, though most days I am still at home. I have been too exhausted.

Even the good things don’t get done when I feel like this, and it can last such a long time. On my best days, I wonder what I am doing home, and feel guilty. It is as if I could conquer the world… well, not quite, but possibly I could do my old job okay. And then times like these come, and I wonder how I ever managed at all.

Except I didn’t manage; not really. For a time, I was able to hide my struggles, and suffer the fears and exhaustion alone – but in time it always showed up. I am not a great actor. I wasn’t even exactly trying to act, just… I knew that with enough time, I would heal, and be able to do this well again (whatever this was.)

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I told myself that if I could just get past this moment, and was able to come up with the right plan, I would be able to do these things that I loved (or at least felt good about doing – when I was doing them well.) For a while, I could lie to myself, but the lies couldn’t be believed forever, for always I would crash.

When I crashed, I knew that I have given more than I had to do this well – and failed. And I hated that I failed. It isn’t like I looked at it like an illness, or disability that made me incapable of doing even the minimum of what I saw others doing – I looked on it as a fatal flaw in myself: a failure. Others could do it. I wanted to, but couldn’t. Why was there something so wrong with me.

It didn’t help that when that failure came out, the judgment of others said, “you could have done that well, with some effort.” People were angry at me for failing. I was angry with myself. And the shame of that was overwhelming. Yet… they had no idea how hard I tried, or how much I longed to succeed. It isn’t like I let things go, and allowed the failure – I gave more than all of me, and I failed, and I hated myself for it. I didn’t need them to hate me, too.

So I sit at home these days supported by disability payments that come from public taxes, and I feel guilty. Guilty again that I can’t do what they think I should: work, and succeed, and do it well. I can’t.

But today at least my eyes are opened. This is can’t. This is not won’t. I would work if I could, but I can’t. I would succeed if I could, but I can’t. I would do well, I would have kept my children. I would have kept babysitting, or working at the motel, or something if I could, but I can’t. And this is why.

Sometimes I get so anxious, and so exhausted, and so sick, and I crash. It happens a lot! It happens more than not. But it isn’t because I don’t try, and it isn’t because I don’t put in the effort, and it isn’t because I am a horrible person… I have to remember that. For until I let go of the: “This is all my fault. I am no good. I hate me,” thoughts, it is unlikely I will ever be well enough to… do even part of what they expect I should have been able to do all along.

Go easy on people. You never know what battles they are fighting.

 

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