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Monthly Archives: May 2016

Autism: Drowning All Alone

It was the summer of 1987, and I was ten years old. School was just about out, and as usual we had our ‘end of the year school trip.’ We had gone to Marineland that year as well, but that was part of our Science program, and not ‘the trip.’ No. For that one, they took us to the water-slides and wave pool along the lakefront in the city where we lived.

I was quite a loner that year. I was quite a loner every year – but that year, we had been shipped off to another school as we awaited a new one being built for us. The ‘old’ school (which had also been built for us, and opened the year I entered Kindergarten) was overfilled, and by forth grade, we were already out in ‘port-a-packs’ because there was no room for us in the school.

So not only was I in a new school, but I was also put in a split level class, and was the only person from my ‘old school’ in my grade in that class. I didn’t know anyone. Not that I hung out with anyone in my previous grade either, but…

Anyway, there I was at the wave pool, enjoying myself on my own – because what else was I suppose to do? Even after a year, I still wasn’t friends with anyone in my class. I wasn’t a strong swimmer, but I did enjoy it. I was in a section of the pool where I could just touch the bottom, when they turned the waves on. I still remember the sensation of being plunged under the water again and again by the waves, and barely being able to get a small breath in before I was plunged under again.

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Luckily the waves didn’t last long, or that would have been the last day of my life. No one noticed my struggle. No one ever did. It didn’t matter if I was drowning beneath the waves, or drowning in a life that traumatized me, they never noticed.

After that, I decided to spend much of the rest of the day on the water-slides, or sitting on my towel on the concrete beach. I had brought a t-shirt to wear over my swimsuit for the sun – but found when I got there that t-shirts weren’t allowed in the water. I had sunscreen, but at ten, didn’t know about re-applying it when I got out of the water – and as I said, I was alone. Though I had a class, and teachers, and people all around me, I might as well have gone to the park alone on that day for all they noticed me, and helped me through my struggles.

Of course I ended up with a really bad sunburn on my shoulders especially. Blisters and all, and extremely painful. Being the quiet child that I was, I never mentioned that to anyone. When we went to school the next day, one of the boys in my class put his hand on my shoulder (I don’t remember why) and I punched him. I wasn’t a violent child. Not at all. But that hurt! I very nearly got into a lot of trouble, until I mentioned the sunburn, and the teachers looked at my shoulders. Then they understood, and I was let off with a very mild warning.

That weekend, I went camping with my family – and got in trouble for ‘whining’ about my shoulder when explaining why I couldn’t wear a t-shirt, but wore a tube top instead. Though my father was abusive, the rest of my family weren’t. They were, however, of the generation that believed the phrase, “suck it up, buttercup,” which felt harsh on a child as sensitive as me. But that, is a post for another day.

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Autism: Easy Questions?!?

Do you have a garden?… It should be an easy question to answer, like the one, “Do you have any children?” or even better, “How many children do you have?” Easy, right? Just a quick conversational piece. I understand that. They are not asking all about my life, just a few, polite, easy questions. And then as my mind starts spinning, wondering how to answer, they look at me in a confused sort of way.

Not a hard question. It doesn’t need thought, the answer should be right there. Should be. Should be, but it isn’t. Like so many things, my life is more complicated than that. More complicated than many people’s lives, and what starts out as a polite question, leaves me in a state of confusion and panic. How do I answer that?

My neighbour has a garden. It is beautiful, and she and her husband are out there all the time working on it. I admire her garden, and wish I was as capable – but the cost, and the labour (I haven’t a great back – but then, they haven’t great knees…) and the energy, and the skill.

People have told me I should just ask her to teach me. People love to share their skills. But I can’t exactly learn from people – they scare me until I can’t think, or move. Instead, I hide in my house, afraid of what she will think of me, because I can’t.

Many of the women in my church have gardens. My backyard neighbour (a member of my church, though we now go to different services) has a large vegetable garden. When I am on my deck, I can see her working at it, and all the vegetables look perfect – like a picture. This above all the trees and flowers they grow as well.

The point is, they know what they are doing. Do they have gardens? Yes! But if I say I have a garden, well, it just points out my failure – to me, even if they never know. Most of what I plant doesn’t grow, and what does grow… well, I’ll just say it doesn’t look like theirs.

So I should say I don’t have a garden? But I have kale, chives, and mint growing in one raised bed – along with two or three other plants that might be flowers re-seeded from last year, or might just be weeks. In the other bed, I have a few green onions, a largish patch of hostas and another unknown plant (given to me from someone in my life group, who would have ‘thrown them out’ if I didn’t take them), a small patch of lavender that was in a pot through the winter, a tiny dogwood bush that I planted in the middle just because, and some little wildflower seedlings that are just coming up.

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Along the fence line, I piled a bit of leaf mulch (from our huge maple tree) and some dirt beside my burning bush, and a lone patch of lavender. To this I sprinkled a mix of wildflowers and a hummingbird garden mix – and at the end, I put my ivy, which was doing so well in my house for a couple of years before it decided to die. It might survive there.

Plus I have several fruit trees scattered around – 2 cherries, a plum, and a Saskatoon berry, as well as some raspberries in the backyard. I like to plant trees and bushes. They seem to grow for me.

Obviously I am doing something out there – so to say I don’t have a garden… is that a lie?

After a very awkward silence, I answer, “Not really.” (I have more of a science experiment, I think to myself.) And my husband, listening to the conversation – and not really particular about how it compares to others says, “you sort of do.”

Just like when they ask if I have any children. “I have a son,” I say (and three others who were taken, but apparently weren’t really mine, I add to myself, and my son isn’t a child any longer.)

How do I answer them?

 
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Posted by on May 27, 2016 in Autism: Out in Public

 

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Autism: Crisis Mode

When I was in eighth grade, we had silent reading time. I loved silent reading time – probably one of the most comfortable periods of time I had while in school. The teacher would spread a bunch of books on a table, and we could go up and sign one out. We would read the book, and have to write a report on it whenever we were finished.

I remember the time when I picked up the book Homecoming, by Cynthia Voight. It was the thickest book on the pile, but that is not why I chose it. I really enjoyed reading books about people going through struggles, and how they overcame them. They took me out of my own rather traumatic life, and brought me into the midst of people who were having challenges of their own.

In this book, a group of (I think) four siblings were abandoned by their mother in the parking lot of a shopping mall, and decided to make their way to their only relative – one they had never met, and only knew of from the address written on a lunch bag.

They had very little money, and very little food, and had a very long walk ahead of them.

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The idea of sleeping outside, surviving off of bananas and peanut butter sandwiches (which was all they could often afford) and finding ways to make up even a little bit of money so that they could carry on, appealed to me.

It wasn’t that I wanted to live that way, or wanted such things to happen to me, but my soul seems to awaken in crisis. I don’t want that. I am anxious even at the best of times. But when there is no option but to try to survive, my mind goes into overdrive, and I think, “I can do that.”

It is the day to day living, whether calm or painful, that is so hard for me.

I suppose if something really bad had happened to them, the idea would have frightened me more. But the book was more about struggles, exhaustion, and worry, than about anything really bad. They had a goal, and they strived to reach it, for there was nothing more they could do.

Goals are something I can live for. To have an exact picture of where I am headed, and a time frame of getting there… I can do that. It is when things go on, seemingly forever, that I fall apart. It isn’t that having goals takes away the anxiety, either. No, it becomes even stronger when I have something I am working for – but that the end is in sight – whether something like the end of a college course, or the finalization of an adoption – helps me to keep going and fight past that anxiety.

However when things go beyond the time I expected them to take – like when the finalization papers were ‘lost’ for our adoption, and we no longer had a set time for how long it would take for that to go through, or when at a job (that is hoped to last indefinitely), that causes me to fall apart.

I don’t know why I live for crisis. I am not even sure that I do. It is just that maybe a crisis results only in things that must be done, and then will end as life settles – and life itself? Goes on until death.

 

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Autism: Pajama Day

It is quarter past one in the afternoon, and here I sit, still in my pajamas. I am not exactly a ‘wear my pajamas all day’ kind of person. In fact, when I see scenes on television from psych hospitals and such, were all the patients are in their pajamas, I think, “no wonder they are depressed.” I know that isn’t the reason they are in there, just… I am sure it doesn’t help.

Not that my regular clothes look all that different from pajamas. In fact, on many occasions children have asked me why I was wearing pajamas during the day. I do need to be comfortable, for if I am uncomfortable with my clothes, I am even less able to interact with the world around me. However I have clothes that I set aside for pajamas, and others that are not.

It isn’t that I just woke up, either. This morning I got up early, and was out of my room by 7:30am. That may not be early for a lot of people, but I have sleep issues, and it is early for me. I am still not sure if that was a good time to wake up or not.

As I woke up so early, I was still feeling… stretchy. Sleepy. Cool. I didn’t want to get changed, so I put on a sweater, and went to the living room.

That time of the morning is a busy one in the kitchen, as my husband gets his breakfast and lunch, and gets ready for work. So I went on the computer to get out of the way – very conscious that I was still in my pajamas, but boy, were they comfortable!

I don’t tend to wear pajamas all day. It makes me feel tired. It makes me feel… I don’t know, not exactly clean (not that my pajamas are dirty, but that I am being “lazy” in not getting changed.) It even often leaves me feeling depressed – as if I couldn’t be bothered to dress.

It certainly pushes away any tiny desire that might have been there to visit with people. Not that people come over anyway, or that I would want that surprise if they did – but when I am in my pajamas, I most definitely don’t want to see people.

I thought maybe that I would get dressed before my son came upstairs. At my normal time. But no. I was too comfortable in my pajamas, and too tired to want to change. Of course, by then (since I was up so early and had my early computer stuff done) I had started knitting.

I only intended to do a few rounds – but I perseverate. I always perseverate. Two hours later, I was battling myself to stop so I could get my lunch, and I am kind of afraid to start again – for when will I next be able to stop myself? Oh that dangerous knitting activity!

And so here it is, afternoon, and I am still in my pajamas. I suppose I will have to change at some point – at least to take my dog out for his walk this evening. I can’t exactly go outside this way, can I?

But for now, it has started to rain, and the sky is really dark. It sure feels like a day for wearing pajamas.

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Autism: Not Exactly Picky

As I consider this post, I think it is likely true that I am writing too much on food lately. After all, this is not a food blog. However, my Autistic brain fixates on things. That is the truth of it. And when I am in the middle of a… what do I call them anyway? Fixation. Perseveration. Idea… whether it be gardens, or housing (as it was for quite a long time last fall) or food, it is very difficult for me to talk about something else.

At least this idea that has captured me has been productive this time. I may not be losing weight – but that has more to do with the amount I want to cook right now, than how healthy the food is. I won’t say that all the food I am making is especially healthy – I mean, the mayonnaise took a cup of oil. Plus it used soy milk. So did the vegan butter. But then I know what went into each of these foods, and the ingredients list was not long. It has to be better for me than the store stuff, doesn’t it?

Today I made a mess of the kitchen. I admit it. I made both vegan butter, and McChicken style chickpea burgers. I don’t know how the butter turned out, as it needs to set – but the chickpea burgers? I had one after lunch (avocado and cucumber on homemade corn tortillas) because they took a while to cook, and coat, and bake… but I still really wanted to try one.

The rest of the tray, after baking for half an hour, will be frozen for future meals. I took one, and quickly fried it up. I ate it with my vegan mayo that I made a couple of days ago, with some mustard on top (no bun, I haven’t any gluten free buns at the moment, and I had such a strong reaction to wheat I ate on Sunday, that I didn’t want to chance that.)

Though it was a lot more work than I usually put into my meals, it did make 11 burgers, and I only eat one at a time. Plus it was so good! It was definitely worth the time (and mess – though my son, whose job it is to clean the kitchen, might not agree. I did clean up my mess, though.)

I changed the recipe that I used quite a bit, actually. Since it called for chicken flavoured seitan (made from vital wheat gluten – a definite ‘no’ for one avoiding wheat) covered in wheat based tempura batter. I think it even had eggs in the recipe, but since I have been allergic to eggs so long, I am used to just ‘translating’ that word in my head (often to tapioca starch, this time mixed with a bit of liquid from the can of chickpeas, and mixed with some turmeric for colour and added benefits.

In place of the seitan, I used canned chickpeas (I have dried ones at home, but rarely plan far enough ahead to use them) rolled oats, and a small amount of textured vegetable protein (not exactly healthy, but it helps with the texture.) I also added some vegan mozzarella (cashew) cheese to the burgers as I made them, as I had some in the fridge from a couple of days ago that I wanted to use up – and cheese on my burgers? It just made sense.

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Okay, so maybe I don’t need to share all of the details. The point is I can be both flexible and creative on my own terms, even when in the midst of perseverating on an idea. However, it has to mean something to me.

And so I continue on researching this topic – an unusual one, since I really don’t like food all that much, and mostly prefer just to get through my meals with as little thought or preparation as possible – and I am continuing to enjoy myself immensely.

You see? I am not picky. I just eat differently, and can’t stand the foods most people eat – but there is still a lot of variety to my diet.

 

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Autism: Mother’s Day

For years this has been a difficult day for me – like Father’s Day used to be while I was growing up. I could celebrate my Grandfather. He was a very positive influence on my life, and I loved him dearly. However, I was obligated to celebrate my father, and he was not.

It wasn’t that I didn’t want to do things with him. When we were out, my father was a lot of fun. He was even easy to talk to – and that is a big deal for a person who struggles to talk. But when I went to get a card, they always said stuff like, “the best father,” or “I am so lucky to have a father like you,” and that wasn’t true.

Even though he was fun, and easy to talk to, he was also manipulative, and would later use those things he learned against me. I don’t know why I shared with him as long as I did. So “lucky,” was not the word. And it isn’t like I could (or even wanted to) get him a card that said something like, “to a horrible father, who has his good moments,” or something. No. The cards were full of lies, and I just wished the day would pass us by.

Even that kind of card wouldn’t have been accurate. More like, “to a father who confused me, and made it hard to trust people.” For most of the time I didn’t hate him. I hated what he asked me to do – but then I blamed myself.

Anyway, back to Mother’s Day. How can I celebrate Mother’s Day, when it reminds me more of the children that were taken, then the one who was left? I always feel such shame in asking to celebrate this, as “I lost my kids,” keeps ringing at the back of my mind (or, well, not so far back, really.) So how can I say to my husband and son who are left, “come, let’s celebrate me, today!”

Maybe (and I have been told this often enough it must be common opinion) people don’t think of my loss in the same way I do. “The ministry was wrong,” they tell me. “You didn’t lose your children. You failed to adopt. That is all.” But in my heart and mind, I have lost my children, and that pain makes Mother’s Day especially hard for me.

“Who here is a mother,” they ask, and I timidly raise my hand. I have my son. I still have my son. But for a person who dreamed all her life of having five children, had four, and only has one adult child remaining – well… I am not what I thought I would be. And this day reminds me of that failure.

And then they speak of those who wanted to be a mother, but couldn’t have children. I think, “that is me,” but then, I did have one son… but then I had four, and now? And they speak of those whose children died, or those who as adults turned away, and I feel that pain. But mine were taken. They are still here. They still live. But I don’t know them anymore.

I walk away from church feeling sad, and wondering how I could possibly ask my family to celebrate me. After all, I lost my children, and if you “mess up raising your children, nothing else you do matters very much.” And I realize that my shame over this is not past, and I feel again my fear over the world that has such power to decide.

And in my ache, I hear in my mind, “I wish I could have children.” And I realize, though I am nearly too old now for that to be a possibility, it is still what I long for. No matter how much I try to tell myself I am okay with a future without children, I am not. Not really.

So we drive home, and I walk in my door, and I am greeted by my dog and one of my cats. They look up at me, and in their eyes I see that I am still needed. I am still wanted. It may not be everything, but I am still ‘mother’ to them, and that at least is something.

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Autism: Research Days

As has been true the rest of this week (and the weeks before that, if I remember correctly) it is now afternoon, and this is the first thing on my ‘list’ that I have even begun to do. The list is my own, and doesn’t require accountability to anyone else, but I like having it. The ‘list’ is the bare minimum that I want to accomplish each day. If I finish it, the day was okay. If I do more (which doesn’t happen often, as my energy is so low) I feel the day was productive. This is my list:

  • Devotionals. I have a daily devotional, as well as a prophecy news guide sent to my email each day. Above reading that, I read at least 1-2 chapters of my Bible each day. Right now, I have recently completed a reading that took a bit more than a year, and am back to Exodus. I like the stories. It takes me longer to read directions and laws and such.
  • Spanish. I am studying Spanish on the site Duolingo. I try to do at least 2 exercises each day, but only 1 on Sundays. I like learning Spanish, and have taken courses in the past. I am not great at learning languages. My son is much better. He is studying German on the same site, and probably speaks to me in German as much as English – that I don’t understand what he is saying most of the time encourages him more. Such humour!
  • Blog Post. Right now I write one post each day, for six days a week. If I am really inspired, I will write another, and schedule it for future release. I am currently writing my posts a week in advance. It helps calm me to be so far ahead, though I know the summer is coming fast, and I will likely be away for a couple of weeks at some point. I really need to get working on that. Sometimes I think I should write as much, but I am compulsive that way.
  • Musical Keyboard. Again, I am not great at learning this. It takes me so much time to read the notes that I can’t do it while I am playing. I write the letters above to help me out. For about 6.5 years I was practicing on the same 5-6 songs, plus some from the recorder books, which are easier. In the last two months, I have added another two songs. I guess for me that is really good. I could never play at church, but I like playing at home, and my cat seems to enjoy it!
  • Cleaning. Some days I will clean for a few hours. Most days just a few minutes. I like cleaning, but I haven’t much energy, and I tend to perseverate on something (often sedentary) and struggle late into the afternoon in the fight to get something done. Still, I think I keep up pretty well. Even a little bit each day for six days a week can make a big difference. If I was working (from experience I know) I wouldn’t do as much cleaning in a month as I now do in a week – and I would feel it. This is okay.

Only I have been spending my mornings, and into the early afternoons, perseverating on research. Don’t get me wrong, I am really enjoying it. But my conscience is constantly tugging at me saying, ‘get something done!’ Of course, I am doing something. I am researching food options for myself, and I am accomplishing a lot!

Today, for instance, I made vegan mayonnaise. It was so simple, and so good!!! I can’t tell you how pleased I am. Especially since I have been allergic to eggs so long (bad for the last 15 years) and haven’t been able to have it. I missed it so much. I did try Veganaise, and I liked it okay – though my stomach, not so much – but it is really expensive. The mayo I made today was so much cheaper than even the real stuff, and I like it a lot! I think I may even use it in place of sour cream (I know, I shouldn’t be eating that, but I really like it – especially for taco salad or vegan chili.)

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So far, I have still completed my list each day, and once I have, I feel ‘settled.’ Until then, however, I am in a battle with my own mind, trying to break away from whatever it is I am fixated on, and get something done. Even then, it doesn’t last long, and I may spend an hour or two total on my ‘list’ – even though I very much enjoy those activities, and the rest of the day I am perseverating.

But it sure does feel good to have the time to do that!

 

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