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Monthly Archives: June 2017

Autism: 365 Days

The day… I was aware of it. Of course I knew it was coming, only… I expected the sadness. I expected missing him. I expected that I would think of him a lot, and wish he was here, and wish he never died.

But he did die.

And as the one year anniversary of that date quickly came upon me, I did feel sad. I did think of him a lot. I did miss him. I always do.

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What surprised me was the panic. The irritation. The feeling of being completely overwhelmed and powerless in this life.

I don’t know why it surprised me. These emotions are nowhere near abnormal for me, but…

May of 2017 was a good month. A really good month. Better than any I have probably had. I had energy. I was (mostly) calm. I was content. I was happy.

As June 8 approached, I expected to cry a lot. Instead I shook. My mom is still here. I am thankful she is still here. But I haven’t been visiting well. It has been hard to talk. When I am so anxious, I retreat inside myself. Inside my head it is so loud, that I forget the sound doesn’t carry forward into ‘real’ life.

I have been so quiet, and I feel bad. “It is a hard day,” I explained to her (even before the day arrived.) She acknowledged the words, and we remained mostly in silence.

And then we reached the day before. I was washing the breakfast dishes, and she came in to talk to me. Her words were ‘off.’ She seemed ‘off.’ She sat down on the dining chair and I kept looking back.

“Are you okay?” I asked her.

“Just dizzy,” she answered – but her words were slurred. Slow. Like she was answering from a dream. Not like her.

The panic grew, but I couldn’t figure out what to do.

So I asked again, “Are you sure you’re okay?”

“Just feeling really dizzy,” she answered. Still ‘off.’ Still ‘slow.’ Still not like her.

I finished the dishes, and left her there to deal with her dizziness. I shouldn’t have left her, and worried about leaving her – but I really had to go to the washroom, and couldn’t wait.

While I was in there, there was a huge crash, and my dog started barking excitedly. I thought maybe my mom had tried to get to her bedroom, and had knocked over the baby gate leaning on the wall in the hall. That happens often.

I got back to her as quick as I could, and found her on the kitchen floor, covered in spilled cappuccino. She was just starting to get up, and seemed highly disoriented. Our guess was that she had fainted – a mix of Gravol and Valerian she had taken during the night before seemed not a good mix for her. It was the first time she had taken the two together, and only the second time she had taken the Valerian at all.

Maybe that was it. She didn’t want to go to the hospital to be checked out. Instead she rested, and I worried for the day.

364 days. Three hundred sixty four days before, my Gryff also started falling over in the morning. I also looked at him in concern that morning. He fell, and I rushed him into the vet (well… I rushed, they left him waiting in the waiting room for his appointment, though they could see he was in obvious distress.)

He fell. I worried. He died anyway.

A year later, my mom fell. I worried…

Am I sad? Extremely. I absolutely did not want to lose my dog. Who does?

A year later, I was reminded once again how quickly everything could change – and that sadness grew to panic that has been with me ever since.

 

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Autism: If The World Ends

If the world ends this year, or I am taken out of it, what would happen to my girls? To my son? To my mom? Death comes to us all, and I long for a world that is good. I long for a world in which I am good, and where evil had no place. Yet I fear abandoning my loved ones to a life of loneliness, terror, torture, despair. I fear abandoning my loved ones to a life or eternity of hell. This is not what I want for them.

For not knowing God, is that the life they deserve? It is the life I deserve, and it causes me to tremble. Yet by grace I am saved, and I pray that grace to cover them, too. This life may become so much worse than the pain I have known, and I am very afraid; for there is no promise I will be spared such things. I have no illusions that I should be spared when millions before and many beside me were not.

Yet this hope remains: that however this ends, and whatever I experience, my eternal future is secure in him that gave his life that I might be welcomed home.

How should I be awarded this surety when others were denied? Am I more righteous than any of them? Truly I know that I am not. I am saved because I believed the one who saved me. Saved. By grace and grace alone. And I long for the same for a world hurting, and dying, and lost.

If I had the words, I would shout it from the mountaintop. Yet the words that tumble from my mouth are rarely understood, and frequently cause offence.

So I whisper it quietly with tears pouring down my face: “Lord, please save them too.” For if God could love me through all of my sin, shame, and failure, I am fully convinced that there is nothing another has said, or done, or failed at that would deny God’s love to them… if only they would believe.

So I pray again, “Lord soften their unbelieving hearts, teach them of your love, and save them.”

And Lord? Please come quickly.

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Autism: Employment Barriers

For six months I have been struggling with the words spoken to me by my psychiatrist during my last appointment, “So you can work, but you don’t want to,” she summarized after I was explaining that I had tried working and going to school so many times in the past twenty years, and failed all along. Her summary was completely off, but that is what happens with me: I feel like I am being completely clear – and when people summarize them for me, the meaning is all twisted and wrong. I don’t know what I am doing or saying to have my words interpreted so poorly – or what I can do to communicate better.

So I wrote, and wrote, and wrote again trying to express my struggles to her so that she would not misunderstand me the next time. However, as is true for me, even my most condensed versions were pages and pages long. So I tried again. And again. And again. Until finally I was able to cut it down to little more than a blog page in length. What was left was this:

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Can’t work, or won’t work? These are the most pressing barriers standing between me and being able to succeed at employment.

  • Severe anxiety – I am told this has to be healed before I try to work again.
  • Easily overwhelmed – prone to ‘crashing’ that can last several weeks or months after just a few days of work, or meltdowns/shutdowns that I cannot avoid.
  • Multiple sensory issues – really, I need to be home, as I can’t avoid these in public.
  • Very low energy – can’t do active jobs (stocking shelves, housekeeping, construction, landscaping, etc.) as I struggle for weeks or months with very low energy, which gets worse the busier I am supposed to be.
  • Emotionally draining – being near people (even not talking to them) leaves me drained after a couple of hours, and lasts days to recuperate.
  • Arthritis – back pain, joint pain in fingers, hands, and toes that gets worse with use – cannot do physical or repetitive jobs, stand long periods of time, sit long periods of time, etc.
  • Physical issues – digestive issues, allergies, stomach upsets, etc that are all made unbearable when away from home. I can’t use public bathrooms (have nightmares) and this makes me sick when away, too. Any work I find would have to be at home.
  • ‘Exposure therapy’ doesn’t work for me. The more I have these experiences, the harder they are for me to bear.
  • Social anxiety – I am paralyzed trying to work with other people around, and must work alone (also no phones, no problem solving, no customer service, no criticism, no handling complaints… I can’t.)
  • Further education is out of the question. I went to college twice, and (through extreme stress, and only being able to get through due to a definite short term end date) did well, but the resulting jobs were overwhelming for me. I can’t seem to apply my knowledge out of the classroom. We can’t pay for more schooling for me – and again, leaving home to go to school includes all of the above issues.
  • Multiple sensitivities – from smells of people’s food in the lunch room, to the smell of smoke on a person, or chemicals that leave my nose bleeding, my hands sore, unable to function… There is much I cannot work around – and such are in each workplace.
  • Sleep issues – I get sick if I try to do things in the evening/overnight. It takes a long routine (8pm to 8am) for me to get the sleep I need. If this is interrupted, I cannot function. Also, there are many nights I struggle to sleep anyway, and then can’t function the next day. I am immediately affected by lack of sleep.
  • Daily Routine. I can’t do changing shifts. I can’t work outside of my routine without getting sick/not being able to function. I can’t just change rules, make exceptions, be flexible…
  • Physical routine. Not so much routine, but I have to eat meals on my schedule, and snacks as I need them, or I ‘crash’ and can’t function. Need to use the bathroom at a moment’s notice, too, so can’t be tied to anything I can’t move away from – and causes panic, sickness, frequent meltdowns when away from home.
  • Multiple triggers – especially when I am in public. These are caused by dates, attitudes, certain personalities, smells, sounds… any reminders of traumatic events and failures – and I have a lot!

It isn’t that I won’t work. If all of these could be addressed, and a suitable job could be found for me (which would pretty much have to be something I could do at home on my own schedule) I would do it – but I am told I am asking too much, and won’t be able to find work like that. Anything less is a setup to failure. I can’t go through that again.

Being told I should go to work when these things aren’t addressed (and some are such a part of me, they won’t be healed, but must be worked around) is like telling me I have to return to a severely abusive relationship – and it terrifies me. After my last appointment, it took me months to be able to get past the depression, and back to the activities that were adding value to my life (but seemed to be dismissed in favour of finding a job.)

 

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Autism: Fighting Demons

It was probably the nicest day of the year so far. It was a Saturday, and I had nothing pressing to do. The day before had been my cleaning day. I had my blog posts written and up to date. There was no shopping that needed to be done…

My mom and I were sitting outside, watching ‘my girls’ who had spent a while happily exploring the yard, and running around, and had moved to rest on the lawn.

I set up the hammock I had gotten from the thrift store the previous fall, and brought out my bag of papers and pencils in case I was inspired to write.

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I lay down on the hammock, and looked up into the maple tree above me, and there I stayed for maybe two hours.

The sun was filtering down through the branches, and the leaves were gently swaying in the breeze.

It was as calm and content as I have ever felt. No fears. No anxieties. No worries. Just peace. For that moment, all was right with the world.

Yet even then I felt this tug at my heart, and fought these words in my mind.

“You will be punished for this.”

Punished for feeling content. Punished for feeling good. Punished for taking time to be okay that I was not in control. Punished for making peace with all that I have lost, and all I have experienced.

And though I tried to push away the attack and fight the demons within, I was not well succeeding.

When other people in the world are so busy, or are so sick, or are living in war torn places fearful for their lives – how can I take an afternoon, and spend it laying on a hammock watching the leaves sway in the breeze.

How could I?

I tried to fight it more. After all, I am never content, like I was that afternoon. I am always fighting some battle in my head – and trying to gain control over things I have no control over – and trying to return to a past that I can’t reach – and trying to make up for things I can’t overcome…

And if I let go of the past that hurt me so many times, and took so much from me, does that mean I don’t care?

If for just one moment, or two hours on a Saturday afternoon, I can make peace with the life I was given, shouldn’t I take that opportunity?

And the demons say, “no.”

But God says, “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

Only I am always afraid – and when I am not afraid? That scares me to. The demons I fight are very strong, and their words are familiar, and it is hard for me to stand.

 

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Autism: One Thing In Several Things Out

Though I really want to, I haven’t been able to keep up.

One thing in, several things out.

It is always that way.

Even when the ‘thing in’ is a good thing – such as now, with my mom visiting. Still I can’t keep up, no matter how hard I try.

It isn’t even like I haven’t got the time. Most afternoons I can expect at least a couple of hours when she is reading her book, or playing her games (Facebook games – so addicting, so frustrating!) And even when we are visiting, I could be writing, too. But I don’t.

I want to, but I don’t.

Coming up with ideas of what to write? Also not an issue. I have the ideas. I have enough thoughts going through my head to have the posts written, and then some. There really doesn’t seem to be any reason why I am struggling so much to do these things. I just am. Struggling.

The visit is going well. I am less anxious, and so much more content than I have been… ever, really.

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Everything is good. Everything. Yet still I struggling to juggle the routine.

And at the end of the week, with my anxiety strong with the knowledge that I am ‘behind’ (meaning only two weeks ahead of schedule rather than the three I prefer) I sit down, and rush to get out those posts and ‘catch up.’ I assure myself that I will be able to keep up next week. After all, the ideas – even the whole posts many times – are already there in my head.

I just need to sit down and write.

And I love to write. I do.

Yet each week the days seem to fly by, and I get behind. So fast.

Even now as I write, I am being pulled away from the computer – for my mom is in the kitchen doing the dishes for the second time today. It should have been my turn. So I know that for the next several days, I will rush to get to the kitchen before she does so that I can do the dishes, and not feel bad that she got there faster again.

One thing in, several things out.

Still, I am determined to keep up with this blog somehow.

But I wonder how in the world other people do it. How do they keep up with everything, when I have so little that must be done, and still can’t do it. And once more I come face to face with the idea that this world is too much for me. Too fast. Too busy. Too demanding. Too hard. Too much… too much… too much.

 

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Autism: Through the Storm 2

The storm, though bringing a lot of wind, didn’t seem any worse than others we had been through.  We don’t live in a very windy city, but a few times a year storms like this come.

Since in our area it is very rare to have the power go out for even two hours, I was surprised to wake up to find it still out. Large trees had fallen across the power lines on both sides of Lakeshore (the street above us that takes us to town) we were told. In fact, to get to work, my husband nearly gave up trying to find detours he could get through with all the trees down.

The power was out from about 10:15pm until 3:10pm the next day – nearly 17 hours! Thankfully (as far as I have heard) no people or animals were harmed by the storm. Fences, garages, vehicles, even some houses weren’t so lucky. There were trees down and debris everywhere! The lakefront trail that we walk along had three trees fallen across it in the short section that we can reach before the trail is flooded (as it does every summer.) Three – and all of them seemingly healthy trees, and that not mentioning the numerous ones that fell beside rather than on the trail.

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A few days later we found that at least two other trails were closed due to danger – we found the one when my mom and I tried to take my girls for a walk. It had red police tape saying, “Danger” all across the entrance. I guess some loose trees haven’t fallen yet.

During the time when we didn’t have any power, I was surprised by the difference in the concerns each of us had.

My dog, Molly, was scared of a pine cone that landed in our yard, which hadn’t been there before (they were scattered all over the yard of our neighbour across the hedge, though.) True to her, after running from it, she decided the best thing to do would be to try and eat it. Funny girl.

My husband worried about how much damage there was to clean up when he got to work. Tarps everywhere! And then was concerned that he wouldn’t be able to get to work at all since there were trees across the main road in both directions.

When she got up, my mom was concerned that she wouldn’t be able to have her morning cappuccino. We solved that issue with the use of a camping kettle, and the side burner on our barbecue (since my husband always deals with things made on the barbecue – and I have little interest in learning – I was glad to find out that she knew how to work it.)

My son was worried that his routine would be broken for the first time in nearly 17 months, as he has been doing his German, pixel art, and word building every morning since January of 2016.

And me? I was okay with not having a computer, or a hot drink, or being able to get to town, or even the debris all over my lawn. I felt that I would be fine if I never had those things again.

Yet my concern was that the power would not return in time to save the food in my fridge and freezer. Food… it is always food. I guess when someone has such an issue with something, it does tend to become their main concern. And as the hours ticked by, I became more and more determined to find ways to store my food which were not dependent on electricity.

For thousands of years people lived without the use of fridges and freezers – yet one storm… one power outage, and so much could have been lost.

 

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