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Autism: On The Defensive

“There aren’t enough jobs for everyone who wants one anyway,” I think to myself in defense. “Some people are always going to be out of work; especially in this economy. So why should I push myself to do something that would be really bad for me, and lead to another failure.”

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The thing is, I do get so defensive when I feel pressured to work. Yet people always seem to judge and pressure people in one way or another. Why do we do that? As if our opinion, and our preferences (or how we chose to push ourselves) is all that matters – and who that person is, and what is best for them, means nothing at all.

I know that people do this, yet it still consumes my thoughts, overwhelms me, and fills me with anxiety and self hatred when it is directed at me; it always has – even when I was working, and especially as I was raising my children; for parents get the worst pressure put on them to conform to other peoples opinions.

  • I should want to work; what is wrong with me?
  • I should push myself to work; I must be lazy.
  • I shouldn’t want to be home all the time; it is wrong to be isolated.
  • I shouldn’t be living off public support; I must be selfish.
  • I should just live with the overwhelming anxiety, depression, irritation, exhaustion, burn-out… that comes from working – like everyone else does, right?
  • If I can’t work, I have no value.
  • If I have no value, I don’t deserve… anything.
  • If I can’t meet their expectations, they would be better off if I didn’t exist.
  • No wonder they hate me.
  • If they hate me, I must be no good.
  • Since I can’t be good, I hate me, too.

And you see how quickly the pressure for me to do what they think is right leads to depression and suicidal thoughts?

Because no matter how hard I try; no matter how hard I have always tried; I am always a failure in their opinion – and no matter how defensive I become towards their opinion, somehow I always end up believing they are right, and I am broken, and I blame myself for that brokenness, for they seem to be of the opinion that if I tried harder, I would be okay.

Yet it is for these very reasons that I was approved for disability. It isn’t as if I woke up one day thinking, “I don’t feel like working anymore. I think I will live off public assistance,” and then somehow convinced those in ‘power’ that a person who was able to function well, but didn’t feel like it, deserved that money. It just doesn’t work like that!

It was out of the brokenness that they found me, and realized that (when 60% of applications are denied for this type of disability payment) that my barriers to employment were so extensive that it was unlikely I would be able to work for a very long time, if ever again.

And still I know that if I ever find myself healed, and healthy, one of the first things I would do would be to go looking for work. I don’t need the opinion, disgust, judgment, or pressure from others to take me there. If I am well, I will find work. If I am not, pressuring me to do what I am not ready for will only break me further.

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Autism: Choices Made Long Ago

This morning I woke up early with a nearly overwhelming urge to plan What if? Not what if I get this job, or win the lottery, or suddenly find myself pregnant, but more on the lines of: What if I could return twenty years in the past, indwell my twenty year old body, and live and make decisions based on who I am now, and what I now know?

If that were possible, what would I do differently? What would I do the same? Where would I live? (On ‘my little corner’ where I always find myself in my dreams?) Who would I live with? What job would I do?

If I didn’t move across the country, would I still have turned to church and found faith? If I hadn’t met my husband, what would his life be like now? (Probably much messier, much simpler, and easier for him, I imagine.) If I hadn’t tried to adopt “my” children, would someone else have succeeded in adopting them? Would they still be together now?

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If I hadn’t moved away from home, would I have followed through on homeschooling my son? If we had remained close to our families, would my son be more social? Would he have friends who lived close enough to visit? Would he seem so alone?

If I didn’t have twenty years of failure behind me, would I still have sought my Autism diagnosis? Would I have brought my son in for his? Would we still have gotten it?

I am completely overwhelmed by the reality that my choices have such lasting consequences – and that if I choose wrong, working to fix it won’t remove all that was set in motion due to that choice.

I don’t know whether this is in spite of, or because of, my form of Autism, but I spend an unreasonable amount of time and energy considering things that are outside of the laws of the world I find myself in.

And though I know making plans for what I might have done is at best a waste of time, the pull is so strong that I will likely spend my day fixated on it anyway. Though I realize it will ultimately lead to me feeling trapped so far from home, for a while – a very little while – I will believe that “anything can happen,” and there I will find hope.

 

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Autism: Overwhelming Empathy

Last night, I got three hours of sleep. It wasn’t even all together, either, and I am really feeling it today. The thing is that I have been so nauseous lately that I end up eating all the wrong foods just so I can eat something. Yesterday that included English muffins with peanut butter. I know that wheat gives me insomnia, but that is my ‘go to’ food when I am nauseous (which has happened more often than not throughout my life) and I didn’t know what else to eat. If I didn’t eat, it would have just made things worse. It is pretty bad when one of the main activities for staying alive makes it so hard for me to live.

Anyway, as a result, I am hardly accomplishing anything today: A couple of loads of laundry, my lessons, and hopefully this blog.

I picked up a ‘new’ book to read last night, and for the fifteenth time in as many years read the chapter that hurts every single time I read it. About one hundred and forty years ago, someone’s dog died. The tears began before I even read the words – after all, I have read this book fifteen times: I knew it was coming. It wasn’t just a few tears, either, but such a deep heartache that I felt in every fiber of my being.

The dog died. That is just so wrong.

It doesn’t matter that he was old, or that he had walked so very far, or that he survived several books earlier when they thought he had been lost. I mean, yes, I was thankful he survived back then. I was thankful to read that he had lived many years after… the thing is, it is never enough.

This wasn’t my dog. She wrote well, and I felt that I knew him, but it wasn’t my loss. Still it hurt. It hurt a lot!

The tears started, and grew, and grew, and pretty soon I was near hyperventilating.

Her dog died, and she knew that she was grown up, because now she had to move forward alone. I cried for her being alone. I cried for the dog who was buried by the path he loved so much, but who would not be moving along with them. I cried for them, despite the fact that they lived so very long ago.

I cried for my dog, who died suddenly four and a half months ago. I cried for the dog that I read about in the news, who died in a house fire beside a young boy, who also died in the fire. I cried for the boy. I cried for the dogs in shelters, and the ones abandoned or abused. I cried for all my dogs who have died, and for my cats, too. I cried for my dog who is alive, but won’t always be.

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I cried for all the losses I have experienced, and I cried for all the pain that is in the world. I cried for hungry people, and broken children, and broken adults, and all who are lost and will never find their way home.

I cried for about two hours, and then I washed my face, and said goodnight to my husband. As he fell asleep, I started crying again – for the pain of nearly one hundred and forty years ago is just as real, and felt just as strongly today. And I feel the pain of the world, and I feel it so deeply that I can hardly move on.

So you see why I have to block it out? You see why I might struggle to respond well to the pain of another? It isn’t that I don’t feel, but that I feel so much, and so deeply, that I become overwhelmed.

 

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Autism: Battles From Good

The moment, though unexpected, was a good experience. Such things do not happen for me often, especially when I am around other people. I can even see how I was being prepared ahead of time for this particular moment, so that I would be open and receptive to it.

Here is was, smack dab in the middle of Rosh Hashanah. Okay, so it is a Jewish holiday, and I am not Jewish, nor do I exactly celebrate their holidays. I do make note of them, however. I feel the times and seasons are important to some degree. Not that I need to celebrate, but more to be aware of when they are, and what they mean.

Each day in my inbox I receive probably about 20 emails that I delete without even opening them up: companies trying to sell me something, survey invitations, food recipes, craft ideas, plans for going off grid… in short all items that were a fixation at one point or another. Then there are the emails that I pretty much always open: daily devotional, prophecy news, posts from blogs that I am following, emails from family, friends, and health care professionals…

Included in this list are emails with news and information about Israel, and Jewish people (also a recurring fixation at different times in my life.) Typically I don’t read these. It isn’t that I am not interested; like many of the others, I just have to choose how to prioritize my time. Despite not having a job, I still feel busy, and still try to use the time I have well.

Only I chose to look at that email, and more, I watched the video linked to it. Basically it talked about Rosh Hashanah – the Jewish New Year, when the Jewish people are taught that the souls of every person on Earth go before God, and he decides what will happen to them in the year ahead. So, lots of information, but what I got out of it came down to this: Rosh Hashanah: Anything is possible.

And so I started praying. It goes in hand with what I was saying about being 7 years from losing my kids, and turning 40 the same week. A week after that? Rosh Hashanah. How I long for change. Not just any change, but something good. Something wonderful. A complete turn around from what my life has been so far. I not only long for it, I need it. As you might have noticed from my fifteen months of posting – I am not doing great. I can’t pull out of it on my own (do you read how hard I try?)

I don’t even know what I need, but I know I need something. So I pray.

That day, I had just come back from a walk with my dog. I was standing in the yard, when a neighbour (from ‘my’ church) came by. We started talking about some very personal things, when another neighbour (also from church) came by. We talked, and then ‘we’ prayed (okay, I didn’t exactly pray out loud, but I did explain to them why I couldn’t, and I did pray in my head within the silences.) When it came to praying over me, and they were praying for healing over traumas in my past – which I hadn’t spoken about, we had been talking about general traumas including health issues – they both were overwhelmed, and there was a loud silence before they carried on.

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Anyway, it might seem strange – and for me, it was. Yet because I had been praying so hard for change, and for healing, and for really good things to happen, I was highly encouraged by that moment.

I felt really good as I walked back into my house – yet within minutes the attacks began. “What were you thinking?” “How could you share like that?” “They are going to hate you.” “Nothing good is going to come of this.” “Nothing good ever happens to you.” And on and on the attack came, worse and worse as the minutes ticked by. The anxiety was so severe that night I could hardly sleep. I woke up sick, and full of fear.

Later that day, my son got upset about my dog, and actually swore at me (he has never done that before, despite being 20 years old) and told me he wanted to leave home. It has been three days, and he hasn’t talked to me since. After that, my pain grew. It grew and grew until the tears were a river running down my face.

If I hadn’t lost my dog… If I hadn’t lost my kids… If I hadn’t moved so far from home… If I had been more patient with my son growing up, maybe he would be more patient with my dog… If he leaves, I will never see him… If he goes, what will I do?…

For hours I was in such pain I was hyperventilating, and my headache grew and grew.

That is the thing. When good things happen in my life, I get attacked. Every time. And it often hurts even more… well, no – it just returns me to the pain of all the bad things. So it gets to where if something good is happening, I immediately start panicking, because this is my experience afterwards.

The thing about my fears, that seems to stump the counselors, is that they very frequently come true. And do they hurt as much as I feared they would? Absolutely, and much more. I guess that isn’t true of most people – seeing as that is a tactic counselors use to try to calm anxious people. (“Think of your worst fear.” “Has it ever happened?” yes “Was it as bad as you feared?” worse!)

So yes, I am afraid of the good, and I am afraid of the bad – and this means I am pretty much afraid all of the time!

 

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Autism: Vicious Cycle

This week I have been filled with… anxiety, irritation, depression, despair. I suppose it doesn’t help that in order to deal with these issues, I start eating and drinking things that aren’t especially good for me: Gluten, dairy, caffeinated pop, cappuccino, meat even. Though I know these foods aren’t good for me, and I know they will at the very least increase my anxiety and irritation levels, there are times I just can’t seem to help myself.

While I technically know that these foods wreak havoc on my emotional stability, the challenge is that when I am struggling emotionally, most of the foods that are good for me end up leaving me nauseous. This not only after I have eaten them, but at the very thought of eating them. So what do I do?

It is strange that the very foods that I know I am intolerant to are the ones that settle my stomach the best. Well… dairy not so much, but it happens to be easy, and go with many of my favourite foods. The meat? It is more that it is what my family are eating, and even then I am strongly limited by what I like (which isn’t much) and then I feel bad for eating it. So why do I?

I suppose it is likely true for most people that we eat healthiest when we are feeling our best. But when I am struggling so much just to find reasons to keep living, how can I then find the energy to care that I am not eating well? Priorities. I realize that eating healthy will eventually help me emotionally, but it is just too much in those moments – and as I said, eating like that initially leaves me feeling sick. It is a vicious cycle. One in which I actually have to be healthy, to eat healthy, so I can be healthy… you see?

Perhaps it would help if the foods that were actually good for me were cheap and easy to make. True, fruit is easy – but when I feel like this, I am really too tired to eat fruit. Plus it leaves me feeling hungrier, and with stronger cravings for those foods I shouldn’t eat. Nuts are easy, and tasty, but they are expensive. Vegetables are good, but take a lot of prep time.

If there was, say, a tray of cut fruit, vegetables, nuts… healthy foods prepared and in front of me, I would likely eat that. But that is rarely the case. I could buy these things in the store, but the cost is prohibitive. So when I am feeling okay, I will go and buy the fruits and vegetables, fully intending to cut them up for this very reason – but that only works if I get them cut before I crash, and I often crash when I get back from shopping.

All this to say, “I am not doing too well this week.” So would I have been like this anyway, or does it remain because of what I am eating? I really can’t say. I just hope, like every other time, that I come through it more or less intact.

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I Will Restore The Years

“I will restore to you the years that the swarming locusts have eaten.” Joel 2:25

This is the promise I rest on, when all seems dark and lost. When I am crying in my bed, afraid that I will not get through another day.

Everything is lost, I think in despair, there is nothing now to look forward to. And I am reminded of this passage.

But it is my fault. Though others have been involved, and some of my struggles, and many of my flashbacks are related to what others have done to me, I nevertheless claim responsibility to where I am today, and it hurts.

In these moments, reading Job doesn’t help. Job was a righteous man… okay, so Satan sought permission to try him, and Job struggled a lot, but it wasn’t his fault.

Sometimes I seek comfort in the story of Job. Not everyone who suffers does so because of something they have done, or failed to do. Sometimes we can’t understand why bad things happen to good people. Sometimes there is comfort to be found there… but not in these moments.

The story of Joseph, too. Okay, so he bragged a little – or a lot. Still, he didn’t deserve what happened to him. Sold into slavery by his brothers… put into prison for something he didn’t do. He had a hard life, and it was a long time before things started to look up for him. But it wasn’t his fault. At times, there is peace, patience, inspiration to be found in Joseph’s story… but not in these times.

Jacob lied. Moses killed. David took another man’s wife (and so many others) and put him in a place where he would be killed. All of these were used of God anyway, in spite of themselves. I hope I can be used, but I don’t really relate to these men. Not really. The suffered, were tried, and then were used for great things. There is hope there, but not comfort. Not now.

But this! These words. This passage: “I will restore to you the years that the swarming locusts have eaten.” That would be wonderful, Lord! I think, But it is my failure that brought me here.

And that little bit of hope that comes with this thought starts to fade.

Read more, God tells me. So I do.

I read about how the Jewish people turned away from God, and were full of sin. In response, God’s wrath is coming against them, and they are in real trouble. Surrounded by enemies, famine, pestilence… The end is near, and it is their fault.

Everything seems hopeless. There is no way out. They deserve this.

And God tells them to return to Him.

They look in the mirror and see themselves as they truly are, and are disgusted. Full of hate for themselves, and what they have done, and cry out to Him. I see myself here, in my worst moments, I am there, facing that same mirror, and hating all of me.

And He gives them this promise, as He has given to me: “I will restore to you the years that the swarming locusts have eaten.”

Which ones? I ask.

All of them, He tells me.

And there I find my comfort.

 

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