RSS

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

 

Tags: , , , , , , , , , ,

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.

 

Tags: , , , , , , , , , ,

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

 

Tags: , , , , , , , , , , ,

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

 
 

Tags: , , , , , , ,

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.

 

Tags: , , , , , , , , , ,

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.

 
 

Tags: , , , , , , , , , , , ,

Autism: Whaler Seats and Round Caps

Standing at attention, on the parade square, wiggling my feet as I had been taught to avoid fainting (how embarrassing that would have been.) My legs are itchy. My arms are itchy. My head… stinging. Bad headaches. Every time. Hard to be still. So uncomfortable. Is this ever going to end?

Year after year, I wonder how they do it. Yet I do it, too, but the cost is high. They don’t seem to notice. Things don’t seem to bother them like they do me. I would know. I should know. They talk. They would have said something. But of course, I never do.

My face is pale. Of course they notice that. They send me to the infirmary, afraid I will faint, and bang my head on the blacktop. I never fainted. Not once. But those headaches… the itching I could not ignore… they never knew of those.

How hard it was to endure, but endure I did. I loved it there. Okay… I didn’t like the games. I didn’t like having to sleep in the same room with 20 or so other girls. I really hated public bathrooms (a large part of the reason I was sick most of those summers.) But I did love camp. I did love Sea Cadets. And year after year I returned. Four years at summer camp – twice in Ontario, twice in BC, and one summer in England. Five years of cadets, and I loved it.

Then there were the whalers. Large metal boats, with row after row of hard metal seating, and big heavy oars. I didn’t mind rowing. Really I didn’t. But these were ocean boats, and sitting on those hard metal seats, soaked with salt water… itchy. Unbearably itchy. That is what I remember most. Not the pain of rowing – that became routine… soothing. But hours of sitting on salt water? Torture! Yet none of the other girls seemed to notice.

And the food? Okay, everyone complains about camp food, right? But my problem was more with my stomach than with the actual food. I don’t take change well. It isn’t just a mind thing, but my body protests it also. And then I had allergies that hadn’t yet been proven – but try explaining to your P.O that you can’t eat the macaroni they just handed you after saying, “no switching – you eat what you are given!”

I couldn’t play the games. I fell asleep in the classes – I can’t function on so little sleep, though no one else seemed to have a problem. I was terrified of the cold water, yet happily climbed to the top of the mast on the tall ship. And in the group photos, why was I the only one squinting so bad? They were facing the same way I was, how come their eyes weren’t on fire?

Different. Always different. Never belonging. Never understood. Yet cadet camp? I loved it there!

JLH

 

Tags: , , , , , , , , , , ,

Autism: Thoughts on Aging

When I was seventeen years old, I went to a ‘self-paced’ school on the west end of the city I lived in. I thought, since I struggled so much with school at times, that being self-paced would work well for me. And it did! That is, until there were group projects. Group projects were always hard on me, and being in a self-paced program made it even harder, as there was no one in my class at the same spot as me. I ended up dropping out, but my post is about other things.

I am sure that I had a bus pass at the time, as I lived so far from my school. However, I do remember often walking home from school – and activity that took about an hour, as I lived on the east end of the ‘mountain.’

It must have been about early October. The leaves were just starting to fall from the trees, and rather than walk along the main streets, I walked in the neighbourhoods instead. I really liked to look at houses and yards. I still like to walk along and look at houses and yards.

Several of the houses that I passed during my walk had people in their yards, working on their gardens, or raking up their leaves. Old people. At that age, I always had a peaceful feeling come through my heart while watching old people – an amazing feat in itself, as my post traumatic stress disorder was especially strong that year of my life, and I was always afraid.

008

Old people didn’t have to go to school. They didn’t have to go to work. They didn’t need to worry about clothes, or hairstyles, or… Sure, they may have been watching as their friends and family died one by one – sad – but they didn’t have to concern themselves with things expected, dreams, or goals, or grades that others were constantly asking of them.

I always felt there was some peace in those last years, that I certainly didn’t feel at the age of seventeen, and I envied them. I really did.

And in those days, though I had the youth, and the health, and the time, that I can only long for now, I wished… I wished to know what it meant to be on the other side of life. Peace. Calm. Rest.

Perhaps it was that longing that eventually brought my husband and I together – though I certainly could not have imagined at the time that I would marry someone 24 years to the month older than me. But there is a settling, a stability, an acceptance, that he has which I long for still.

And do you know? Despite being nearly forty years old now, I still long for what I saw in those days – the age where I can finally be free.

 

Tags: , , , , , , , , , , ,

Autism: What Would They Think?

I never could do them. Not even when I was a child. So I am not sure where the fear comes from. Is it a fear of losing control? Of looking silly? Of having people look at me? Judge me? I have never given in to the temptation… is it a temptation? I never really want to do this at other times.

010

There I am, out with a group of people… siting on a couch, sitting on the ground, going for a walk… doesn’t really matter what I am doing. It only matters that other people are around me.

I never really feel this fear when I am with my son. Maybe because I am not afraid of what he thinks of me – not for what I do, or say, anyway. He is the only person that doesn’t bring out such fear in me. The only one!

But there I am, quietly minding my own business, and trying very hard not to call attention to myself, when the pictures start flashing through my mind.

Me, doing a cartwheel in someone’s house.

Me, flipping upside down on their couch.

Me, doing a head stand.

Me, walking on my hands.

Me, rolling onto the floor, and stretching out.

Me, climbing up the tree beside me.

Me, hanging upside down on the branch.

Me… doing all of these things I never do. Never would do. Yet there I am, in my mind, doing them – while surrounded by people. And it scares me. What would they think? How would they react? How could I show my face again?

And while I am there, looking all calm, and quietly sitting (behaving myself) – in my mind, I have already lost control, and they have no idea.

Even if I wanted to, I couldn’t. I have been uncoordinated all of my life. I have never once successfully did a cartwheel. Even a front or back roll is beyond my abilities. I haven’t the arm strength to climb a tree. I haven’t the balance to stand on my head…

But if I did – what would they think?

 

Tags: , , , , , , , , ,

 
%d bloggers like this: