Monthly Archives: April 2016

Autism: New Choices

I stare up at the menu, and the workers try to be patient with me. I am not an easy person to be patient with. Especially in situations such as this. The menu isn’t huge, but I don’t know what these words mean: Frappuccino, macchiato… it isn’t even in English!!! How am I supposed to decide.

And then there are all those numbers beside the words. $3.75, $4.95… for a small drink? Are they joking? It doesn’t matter to me that we have a gift card, because as soon as we walked into the store, it was about buying the drink, and those prices – outrageous! No wonder I have never bought anything from them before.

In fact, it has been years! Years since I even walked into one to consider buying something there. I am pretty certain it was before I moved here, and that was sixteen years ago. I think I even had a coupon – but I couldn’t do it. Not at those prices. Not even with a coupon. Not even with a gift card. Nope.

Of course, this issue isn’t linked only to this one place. I don’t do ‘new’ well, especially when it comes to food. How do I even know if I will like it? And if $5 is spent on me for a drink, that I can’t even swallow, because it tastes gross – or that leaves me feeling sick because it had milk in it, when I didn’t know – it would take me a long time to get over that.

It was a nice gesture. The idea of finally trying something from there, when so many people seem to love their drinks… I wanted to. I really did. But I couldn’t. I couldn’t spend the money – even if it wasn’t mine. I couldn’t choose from a menu that I could hardly read. I couldn’t bring myself to try something new. Too hard. Too much.

And while it may have been a disappointment for the person who had brought me out, I still couldn’t do it. I am glad it was my husband. I am glad he understood. I am thankful we were with family, and they agreed with me when I said I would just go and spend my gift card at the coffee shop where I know what I like (and where the prices, though high, are not nearly that high.) They understood. They agreed. After all, the card my husband was given wouldn’t cover both of our drinks, and he can handle surprise. Better for him to use it on himself, and for me to get a drink I know from past experience that I would enjoy.

I suppose all things were new at some point – even food. But those times when I started, even the things I know I like now, were long drawn out, uncomfortable, anxiety provoking experiences. I am thankful, really thankful, when what was new isn’t new anymore. Familiar. Same. Safe.

So I go to the same restaurants, and order the same food and drinks time after time, year after year. Often I will look at the menu, and consider ordering something else. But always I fall back on the familiar. After all, safe is safe – and change? It is just too hard.niagara falls


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Autism: Heart Trouble?

It wasn’t even that much work. I am sure that my husband does more every hour of his full time job, and he is able to keep going, despite the fact that he is quite a bit older than I am. I am pretty sure that what I was lifting – both in the container and on the shovel – was less than 5 lbs each time. Yet still it caused me problems.

When I have had my heart checked at the doctors, and even with the ECG, they have said my heart was good. Nothing wrong. Yet I know it flutters at times. I can feel it. I can feel it skipping, and fluttering, and it feels like how they would describe a murmur. Only it doesn’t happen regularly, and it hasn’t happened in the 5-10 minutes that I have been in an appointment.

I am not quite sure what sets it off. It can happen when I am working, but then again, it is just as likely to happen when I am lying on the couch, watching Netflix. It flutters. It murmurs. And I wonder what it means.

Today, it was not a murmur that I felt. I had only moved a few (tiny) bins – the shallow type they use for dishes in cafeterias – of leaf mulch. Damp, okay, but not heavy. The day was slightly overcast, and while warm, it was not hot. Yet still, with just 3-4 bins of mulch that I might have carried 50 feet (if that) across the yard, my heart was burning in my chest.

Not only was it burning, but my head started spinning, I could hardly see, I was coughing quite bad (like my dog does now – and he has a heart murmur according to the vet) and I very nearly fainted. For just about 15 minutes of work, and going slow at that, I needed to take another 10 minute break just so I could stand up. After that, I went for about another 10 minutes – much slower that time, before having to stop for the day.

back garden

Twenty-five minutes of light to moderate labour, with a ten minute break in between, and when I came inside, my face was bright red, my heart was racing, and I felt like I would faint. I am pretty sure that if I hadn’t sat down, I would have.

This isn’t the first time that happened. Every time I walk with my son along the nature trail, and come up the steep hill at the end, I feel like my heart is going to explode within my chest. It is highly painful, makes it really hard to breathe, and every time (though we were doing it five days a week until the heat hit this week) I worried that I wouldn’t make it home.

It is hard to explain how, when I look healthy, and come across as healthy at the doctor’s exams, that I can’t keep going as most other people I know do. As the people I visit most with are about twenty years older than me, and work about as hard as my husband, I always feel like I am being judged when I try to explain how difficult these things are for me.

I walk, or ride my bike, or do a little bit of yard work, and my chest hurts so much I fear I will not survive – and these are the times when I am not so anxious. Afterwards, when my heart has calmed down, the exhaustion sets in, and will frequently last for days.

Though I am younger than some who do so much more, and I seem healthy, and even my blood tests and such say I am healthy, I still cannot keep up. I have never been able to. But when I try to explain this – even to my husband – I feel like, at the very least, people do not understand it. I feel like they believe I am lying, or lazy, or…. but I know that I am not.


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Autism: Knit Two, Purl Two

Knit two, purl two, knit two, purl two…

The week was difficult. Busy. Overwhelming. I made it through, but I am crashing now.

Knit two, purl two, knit two, purl two…

Too overwhelmed to think. Too overwhelmed to move. I picked up my knitting project thinking I should be doing something.

Knit two, purl two… all day long.

So much to do. So many reasons to move on to something else. But my mind was fixated.

Knit two, purl two, knit two, purl two.

I got up to practice my keyboard, to let the dog out, to study Spanish – yet in my thoughts, I was still knitting.

Knit two, purl two, repeat.

Tugging, tugging back. All day long, this compulsion to knit, for all else was overwhelming. All else was too much.

Knit two, purl two, knit two, purl two…

This was not how I intended to spend my day. Need to get up. Need to move. Need to clean.

Knit two, purl two, knit two, purl two…

Take the time to make some tea – but now it is cold. Bitter. Not a good beverage for a day such as this. Too many steps.

Knit two, purl two, knit two, purl two…

Hours go by. Hours of telling my mind to stop, stop, STOP! But I can’t. I must… just one more row.

Knit two, purl two, all day long.

Not the worst activity, I suppose. Not the worst addiction, but an addiction just the same. I can’t let go. I can’t stop. My thoughts will not move on.

Knit two, purl two…

pink sweater


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Autism: I Did Okay, I Think

I did okay today, I think.

Though change came so quick, and I wasn’t ready for it.

Though I woke up thinking it would be an average day, and it turned out not to be.

Though I was quickly called out of my comfort zone.

I did okay, I think.

Though I had to drive, and not alone.

Though there was a detour along the way.

Though I had to turn around in a tight space, with many people watching.

I did okay, I think.

Though I drove on a rode I had never driven before.

Though I had to be the responsible one.

Though I hadn’t time to prepare.

I did okay, I think.

Though my routine was changed without warning.

Though, due to the illness of another, things didn’t go as planned.

Though someone came to the house unexpectedly.

I did okay, I think.

Though it was not the day I had hoped for.

Though it was not the day I had planned.

Though it asked more of me than I can comfortably give.

I did okay, I think.

I did okay, I think.

Angel's Roses


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Autism: Need More Time

Since I was about eight years old, I felt I wasn’t ‘ready’ for the future. In fact, as far as I remember, I have not even felt prepared for the present. And while other children were running around just ‘being,’ I was watching, and wondering, and planning, and trying so hard to understand how to get to where they were.

So many nights I spent wishing and praying that I could go back, and try again. Go back, and learn to do it right. Go back, so that next time, I might be ready when the present ‘hit me.’

Only going back has never been an option, and that in itself has been a strong source of sorrow and pain in my life. To only be able to live life forward leaves me feeling trapped, as I cannot succeed in that direction.

It began as a child, and I used to have dreams where I was in a sort of trash compactor (like in the older Star Wars movie – Return of the Jedi, I think) where the walls were closing in on me. One side represented the future, the other the past, and I remember the strain and exhaustion in pushing up with my hands and feet against the walls, and shouting, “I am not ready.”

fireplace me

I have never been ready.

Thirty years later, I am still battling against time. I still do not feel ‘ready’ for the present, let alone the future. I ache for the past, and long to return – but is that really what I want? Even thoughts of returning to the past leave me feeling exhausted. There are part of it that I just don’t want to re-live (such as the funeral for one of my daycare children who died of leukemia at the age of six.)

Frequently I pray for new beginnings, a new start. But I don’t want to give up my husband or son to reach that. I know I don’t – yet something has to give. I can’t live forward. I am not ready for where I am today. I need to go back. What does that mean?

I feel, from experience, that it takes much longer for Autistic people to grow and mature. For that reason, every expected milestone becomes a ‘failure’ in my mind. I was not ready for school. I was not ready to date when I began (as a teenager,) I was not ready to live on my own at seventeen, or even by the time I was twenty-five.

I was not ready to be a parent. I was not ready to graduate, or go to college, or be financially independent. I was not ready to shop for my food alone, or take care of my own apartment, or be fully responsible for my own pets.

I was not ready to own a house, or take care of my garden, or be a ‘neighbour.’ I was not ready to work, or to be married, or to adopt. And I am certainly not ready to turn forty – which I do this fall. I am not ready to have an adult son, or to consider my future as if I am coming at it from mid-life.

Like a child, I could have possibly succeeded in these areas with constant support and supervision – but not alone.

Yet I spent so much of my life striving to be ‘normal,’ and being normal meant doing these things when they were expected of me (or even earlier, as I felt I had to fight for them.)

So all of these things… for all of these things, since I was not ready when I reached them (or even several years into them) I feel as if I have failed at life. But I think the truth of it is, it takes longer, as an Autistic person, to grow. It isn’t that I can’t someday succeed in such things, but that trying before I was ready set me up for failure.

Perhaps that is what I have been given this time for. Time where I am not working, where my son is grown and no longer needs my constant attention, time… Perhaps this time is for me to grow, and catch up in all of those areas I missed, or failed at, because I wasn’t ready when I got there.

And if that is the case, will I still have the opportunity to live, and to experience success in those areas that I failed (and so much wanted to do well) the first times through?

I sure hope so.


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Autism: Against All Odds

No medication today. It isn’t that I am completely off, that has been a very rough, and slow process, and I am still working on it – but my last pill was two days ago, and my next isn’t until tomorrow. So much less that I had been prescribed. So much less. Yet I am sitting here feeling content!

I haven’t been sleeping well. I haven’t been eating great… healthy, okay, but not well for me. It seems my body is not made the same as other people, and what is ‘normal’ and ‘healthy’ for them often leaves me feeling sick and bloated. It isn’t that unhealthy foods leave me feeling good, but that bread, dairy, meat, and even cooked vegetables all seem to leave something to be desired. I will work on it, but that certainly hasn’t contributed to my mood.

It is also one of those weeks. The kind that always leaves me feeling sad, irritated, hopeless. Yet I am not. Above that, in two days it is my youngest ‘daughter’s’ birthday. Three days after that is my middle ‘daughter’s’ birthday. Consistently one of the hardest weeks of the year for me since they were moved over six years ago. That sadness may still come to overwhelm me, but it isn’t here now, and that in itself is a miracle.

back garden

I doubt that I will ever heal fully (or heal much) from the traumas of my past – after all, how does anyone ever get over the loss and feeling of failure when one child is taken from them, let alone three? But today I am okay. Today I feel peace.

I spent today cleaning. I hadn’t the energy for it, and really had to push myself to start – but the truth is, I like cleaning. I like vacuuming, washing carpets, doing laundry, even cleaning bathrooms. I like how things feel when they are clean, as much as I detest clutter, dirt, and mess. Even more than that, though, I like the action of cleaning itself. I find it soothing, and like that I don’t have to think about it much while I am doing it.

I suppose in this day and age, it is not exactly acceptable for women to admit… (am I the only one who likes this?) that they like cleaning, knitting, sewing, being a housewife… in short, “woman’s work.” But I do. I don’t have the energy to do it a lot. I don’t have the body strength to keep it up. I couldn’t do it as an occupation (I know – it was part of my last job – and I liked it, but I couldn’t keep it up.) I am not even especially good at it. But I do like it.

So without medication. Without work to “feel I am contributing.” Without leaving my house, or meeting with other people, or volunteering, or… any of those things people advise to help overcome anxiety and depression, I feel good. Today, against all odds, I feel good. And I am thankful for that.


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