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Monthly Archives: March 2016

Autism: Chew Toys

I noticed it the first time when he was four. My mom moved across the country with us, and then a few months later, needed to move back “home” when my father became sick with cancer. After she left, I found my son chewing on the vacuum cord – as I was vacuuming!

Danger!

I am sure that he chewed on many things before that. Young children tend to. But it was at that time he began chewing with a vengeance. Nothing was safe, but wires, plastic, and rubber were the most common.

This lasted into his late teens. When we had our children, and were working with the Occupational Therapist, she suggested aquarium tubing. We bought him quite a bit, and he went through it all, and kept right on chewing.

Tyler 2006

My son doesn’t have as many sensory issues that go along with his Autism as I do. Not nearly as many. But he could never go down the cleaning isle in stores. He fought brushing his teeth, and showering/bathing until this past year (at the age of 19.) He never liked having water in his face, or the feeling of being wet. He most emphatically did not like getting his hands dirty. And he chewed on everything!

With a little guidance, however, he learned not to chew on cords while they were plugged in (thankfully – that could have been a disaster.) Yet even now, he still chews on pencils and things, but that at least is more accepted behaviour.

So was it the Autism that caused the issue, or was it the trauma of having his Nana move away? This may be something that is never fully answered.

 

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Autism: Turning Twenty

“How did it get so late so soon?

It’s night before it’s afternoon.

December has come before it’s June.

My goodness how the time has flewn.

How did it get so late so soon?”

  • Dr. Seuss

As I write this, we are celebrating my son’s twentieth birthday. Twenty! Could it possibly be? Wasn’t it only yesterday he was clinging to me, and insisting that I pick him up?

Time passes, and I am never ready for it. Never!

The teens were not difficult, though people seem to dread them. The worst I remember him doing is biting his laptop screen in frustration, and cracking the screen. Did he do anything other than that?

For his 19th birthday, I got him a beer. I then proceeded to laugh at him as he tried to drink it – the faces he was making! He blames me for his dislike of alcohol – although to be fair, I think that I am allergic to it. He just didn’t like it, and since then has had no desire to try again.

Twenty is certainly a lot less exhausting than say, two or three – though I loved those years, and would go back in a heartbeat if I had the chance. Like most children, he wanted a lot of attention from me in those early years – though by the time he was 21 months old, he was into the habit of getting me interested in an activity, and then moving on to another one (I guess he felt I needed too much attention, also.)

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When he was young, I had a lot of fears – what if I accidentally let go of the stroller, and it rolled out into traffic (his strollers all had nail marks in the handles where I gripped them too tightly.) What if I fell down the stairs while I was carrying him? What if he choked on his food, or fell out the window… What if someone took him away from me?

Those early years were full of fear, but (being me) I don’t find these later years any less anxiety provoking. I suppose that the downfall of having a child that you love more than yourself, is the constant worry over what could go wrong.

Will he, for instance, move far away from home like I did, so I can hardly ever see him again? And what if something happens to him – a natural disaster, car crash, terrorist attack… What if he dies without faith, and is lost for an eternity? How can Heaven be a glorious place, if he does not join me there someday?

What if there is a war, and he is forced to fight?

What if the world becomes darker and more evil than it already is? What if that evil comes here? What if there isn’t enough money, and he goes hungry?

Perhaps I have too much imagination. Frequently I think so, for other people seem to be able to live – to actually live – without constantly worrying about what might be.

Anyway, my son is twenty today. He has been in my life for more than half of it (I was 19 years, 6 months, and 1 day old when he was born,) and I can’t imagine a time when I didn’t know him.

Happy Birthday, my beautiful boy!

 

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Spring!

Spring has come again, and once more, my mind turns to gardening. Do I plant vegetables and herbs, or would it be best to sprinkle wildflower or country garden flower seeds? I know that my husband would prefer the latter, and it would be much easier (and prettier) to care for.

back garden

At the same time, I feel that in being at home, I should be doing something that saves some money, and provides food for my family (or for myself at least, as my husband and son are mostly meat and potato type guys.) Growing fruits, vegetables, and herbs, is something I always want to do, but there are few things I have been able to grow well.

Even those things I do grow well, often end up going to waste when my energy drops in the summer (due to the heat, and my strong grass allergy) and in the fall and winter (due to darker days.) I still have eight of the ten small pumpkins that I grew last year because, well, they are hard to cut through – so I have just been using the canned pumpkin from the store.

Flowers would be pretty, but…

If our backyard wasn’t on the north side of our house (and the hose bib was not under the deck, which fills with spiders in the summer) I would be happy to plant my vegetable garden in the back. But it does face north, and it is tiny.

Our front yard is just what I would wish my back yard to be – very large, bright, and easy to access. However, there is no privacy here, and our neighbours, with their landscaped yards, question and protest my attempts to live according to my own (admittedly very unusual) patterns.

Even so, spring brings with it a strong desire on my part to garden – and garden I will. It may not turn out well. I may not follow through on the harvest, depending on my energy levels next fall. But garden I must.

It is a drive that returns every year, and doesn’t let go, despite so many years of failing at this very thing. Perhaps this year will be different.

 

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Autism: Bathrooms

My father was a very social person. He was friendly, and well liked, and for much of my childhood, our home was filled with visitors. We also had a pool, so throughout the summers, people would be around visiting with him outside.

There was a time when we had many people over. I think we were having a barbecue, and visiting around the pool. I might have been about six years old

There I was, six year old me, using the main floor washroom, when a knock came at the door. “Is there anyone in there,” the man asked – but as was typical of me, I could not speak. He knocked again, and opened the door… he apologized, and I was humiliated.

fireplace me

The fallout from that moment in time has been lifelong. First of all, even when I am home alone, I always lock the bathroom door. I have to. Second, since that moment, I have had trouble using bathrooms when there are other people around.

I suppose that wasn’t helped by the fact that when anyone got up to use a bathroom, my father liked to tease, “we know where you’re going,” in a singsong voice. For little, sensitive me (with too big of an imagination) that was traumatic. I suddenly got the idea that every time I used a bathroom, someone on the outside was picturing me going in there.

All throughout my school history, public bathrooms were off limits. Most days, if at all possible, I would wait until I went home to use the bathroom – and then was thankful when my family were on a different floor. It was terribly uncomfortable to go through a six hour day without, well… but I could not bring myself to go in there with the rest of my class.

Public bathrooms are such… unprivate – that is not likely even a word, but it suits how I feel about them – places. When I have no comfort in bathrooms with solid walls and doors when people are anywhere near, how could I ever be okay with these?

I began having nightmares about public bathrooms when I was very young – often in which the stalls either had no doors, the walls were so high there was no point in having them, or men and women shared the same bathroom. Horrible, horrible dreams.

Even in people’s houses, I struggled to go when other people were around. Already I had trouble eating around people – likely because most foods made me gag, and I didn’t want people seeing that – but for this reason, I was afraid to drink when I was away from home, also.

So leaving home left me uncomfortably struggling against using the bathroom, dehydrated from refusing to drink, and hungry from not being able to eat. Being home, from what went on there, and the teasing I mentioned above, was also harsh.

While I would use a bathroom rather than wet my pants, it was often several extremely uncomfortable hours before I would finally give in, and the shame over that – just using the bathroom – was such that I was afraid to go out again.

Although I have grown much since then, and no one I know now teases people about that, I still avoid using the bathroom whenever I am out – and at home? We have three bathrooms for three people, and pretty much stick to our own. I still have a lot of trouble using my (en-suite) bathroom when my husband comes into the room.

It is likely something I will never outgrow.

And the nightmares? Still plague my dreams multiple nights each month, and leave me with the same feelings of terror.

 
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Posted by on March 28, 2016 in Autism: Child and Teen Years

 

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Autism: Thumb Sucking

I learned to tell left from right by the colour of my thumbs. Since I sucked my thumb until I was eight years old, my left thumb was always so much paler than my right, so I would hold them up next to each other, and could tell direction that way.

My parents, aunts, uncles, and grandparents all tried very hard to break me of the habit, but it was a hard thing to do. My mom said even the bitter apple stuff she put on my thumb didn’t deter me, as I would suck it off, and ask for more.

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It was my comfort during hard times, and if I am honest (which is the point of this blog) I would have to say that this is still a temptation that I fight. During those moments – and I seem to have a lot of them – my left hand is always by my mouth, with the thumb tucked in, as I learned long ago that such things were “for babies.”

But still there are those harder than hard moments – like when my kids were taken – where I start again, and have to fight the habit again.

What does it do for me now, this thumb sucking? I am not sure. It is the child in me that wants it, and during those moments, I really am still a little child – five years old… seven at best – and am not ready to give it up.

I think the biggest effects of my thumb sucking were the fact that my upper teeth were pushed so far out of place, and I had to have braces. Expensive, I realize that, but likely I would have had to have them anyway – and I needed to suck my thumb.

Perhaps it is a “baby” thing to do, but even older children need some way to comfort themselves – and I had a lot of reason to need that comfort. True it brought about ridicule – from my family, from the other children, from people on the streets, and in the stores – but lots of things I did brought about teasing, and I needed that.

When we had our children, my middle girl also had a very hard time with this habit, and we were told that it needed to be broken. Besides, we had no coverage, and couldn’t afford braces. So true to my Aspie nature, I became compulsive in stopping her each and every time that she put her thumb in her mouth (I didn’t put anything on her hands, but just gently pulled her hand away and said, “no sucking.”)

And though it worked, when they were moved, and I remembered the strength and purpose of that activity, I regretted doing battle over this habit. After all, her life had been really hard, too – and what were a few crooked teeth compared to the comfort she got from the action. If I had the chance to do it again, I wouldn’t make such a big deal over this.

 
 

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Autism: Control Freak!

I think it came as a result of something I was reading. He was sitting on the chair beside me, and I suppose I was being very vocal about the words. As I have mentioned in the past, I have difficulty with swear words. It isn’t so much a matter of principal – more the way they make me feel… like someone cooking Kraft dinner in the house, or the smell of barbecues. Fine for some people. Fine for most people. I acknowledge that.

It isn’t that I feel these things are the worst things in the world, but the smells, the sounds, the words… they leave me feeling very sick. No exaggeration They quickly have me curled up in the fetal position, in tears, and wanting to die.

But it isn’t like I care at all if someone does these things in their house – unless I am there. I would even admit that it is not my place to say anything about it… only – please, please, please, don’t do it when I am there. I can’t explain it. It may seem rude – but remember that I have an extremely sensitive central nervous system. When I say it is bad, when it seems to hurt me, it is not an exaggeration It really does!

So back to the words. I know it is common for people to say them – and really, I don’t care. Just… I don’t want to hear them. I don’t want to read them. I block them out as much as I can, but I am so visual, that as soon as I hear them, as soon as I read them, the picture is in my mind. I can’t help it – and believe me when I say, “it is not pleasant.”

A few days ago, he was on the chair, visiting me – and I was trying to listen to him, while reading an article. And I kept coming to the same place over and over, and that word! I probably would have just skipped right over it, but I was distracted, and got stuck there.

He laughed at me, and then confessed, “I swear all the time,” he said. What? Those words are bad! Now truly, he has never sworn at me – not once, and he is turning twenty this weekend. It isn’t like he is some young child, and even I have to admit, most people his age do. Most adults do.

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Since he doesn’t ever swear around me, I really don’t care – but it has been so much fun teasing him on it. For instance, every time he comes to visit me now, I will remind him to “try not to swear at me.” Or, since he told me he does swear at his cat (and she does cry frequently – mostly because she is just about to turn 18, and is almost deaf and blind, and is asking him where he is) I tell him, “it is no wonder China cries all the time.” I say it in a teasing way (I think) and he often turns away and laughs.

At the same time, he told me yesterday that I was a “control freak.” No, he wasn’t being mean – it was teasing much the same way I do to him – but I could also tell he felt there was some truth to it (especially in regards to the swearing.)

But the thing is, I am obsessive. I am compulsive. I suppose that due to my Aspergers, I do fixate on things. I can’t let go. I can’t! But it isn’t like I want to control him. It is more that I want to control my environment – for so many things hurt.

I guess that he was worried about what I thought, for today, after days of teasing him (I guess it was a big confession on his part) I told him that I really don’t care that much. I am just glad he doesn’t swear around me – which led us to talking about the way we think – how he hears his thoughts, where I see them… all of them. And I think that is what makes all the difference. After I told him that I really didn’t care, he seemed much more comfortable talking to me. I didn’t mean to make him feel bad – but it was really fun to tease him.

 

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Autism: One Failure

When I was in the second grade, I tried out for the school choir. I remember my brother singing “when the snakes crawl at night” or something like that. He had a nice voice. He was accepted. I tried singing, “Oh Canada,” and I think I forgot the words due to stage fright. Needless to say, I was not.

But in those days, singing was something we did. A lot. My father loved going for drives. He was a shift worker, and I remember him waking us up frequently after his 3-11pm shift, loading us all in the car, and driving. We would just fall back to sleep in the car. I didn’t have trouble sleeping in the car as a child.

When we went during the day, however, he would play his music – Everly Brothers, or John Denver, or something – and we would all sing along… okay, my mom never sang, but the rest of us did. It was a lot of fun. Since I was never abused while in the car, and since I never had to look at anyone, it was a safe place for me. Until I started to get motion sickness, car rides (amusement parks, and campgrounds as well, for the same reason) were the places where I could just be.

Just be a child. Not broken, or afraid, or disgusted, or feeling there was something terribly wrong with me. These were the places I had a good relationship – even with my father. Even now, those songs bring back memories in which I was feeling safe, and happy (not a normal feeling for me in any other part of life.)

My younger brother had a terrible voice! I mean it. He didn’t really sing, he just talked – loudly – in a completely inharmonious tune. I certainly preferred the rides where he didn’t come along… mean, I guess, but both my brother and father had really nice voices, and mine was okay – I even made the choir for third grade, and every year after that until I gave it up around the eleventh grade.

I really liked singing.

Then I moved away, and still I sang with my son all the time. I sang with the daycare. I even joined the church choir. I loved singing. I didn’t have a great voice. I would never have been asked to sing a solo, or anything, but it was fine for choir – and I really, really liked singing.

choir

Then there was that one year. We weren’t married at the time. Both of us were singing in the choir. My (husband) also sang and played guitar on the worship team at church. That year, the person standing beside me said I had a nice voice, and should sing with the worship team. I guess she mentioned that to him, for a few days later, he asked me to sing with him in the hallway of the church – no one else was there. He was working there at the time, and I went to help him fold bulletins or something.

The problem was, I had a cold. I had a bad cold, and could hardly talk let alone sing. But I was trying to do things in spite of my anxiety (no matter how much people encourage that, it has always been a really bad idea for me) and so I sang. Of course, with my cold, I was out of tune – and couldn’t get it despite my best efforts. He never asked me to sing with him again, and from that moment on – though I knew the reason I couldn’t sing well then was due to my cold – I never had confidence in singing with people again.

One failure, mixed in with years of success. One failure, and I have never been able to overcome it. I have joined the choir since, but I tend to sing very quiet – just because. I am still afraid to sing. I still have no confidence in my voice – and that very lack of confidence has made it so much harder to do well after. One failure, mixed with years of success – and that is what defines me.

 

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Autism: Simple Machines

For my son’s seventh birthday, I made him a cape. Although he hasn’t much of an imagination, and it often seems like he doesn’t have any at all, we were reading Lord of the Rings that year, and he was Gandalf. He signed into Sunday School under that name, and even signed that name on his library card. My mom had bought him a wizard’s cap, and I thought a cape would be a particularly suitable gift for that year.

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The only thing was, I hadn’t taken Home-EC since the eighth grade, and didn’t particularly know much about sewing. Even buying the materials was foreign to me. Yet since I do not ask for help in such things (if I fail, it makes it so much easier on me if no one knows) I went into the fabric store, told them I was, “just looking” (for if they want to help me, I want to run – always!) and bought what seemed like good material to make a cape.

At the time, I also decided to attempt to make a parachute toy for my daycare – when I have the desire to do something, I like to go “all in.” So I got materials for this as well (again having no idea what I was doing, what material to buy, what it should cost, or even how much I would need.)

I brought the materials home, and without a plan, just went ahead and made those items.  The cape was a little heavy, but they both (I felt) turned out well, and all of the children enjoyed the use of both the parachute, and the cape.

Only the next time I tried to sew something, it didn’t work at all. The thread kept bunching up, and the needle wouldn’t go anywhere… it was a frustrating mess! I thought I had broke the machine, and after several attempts, ended up sending it off to the thrift store feeling like I couldn’t sew.

It was years later when I decided to try again. I bought another sewing machine, newly repaired, from the thrift store, and attempted to use it. Once again, the thread all bunched up, and it didn’t work. Again, thinking I had broken the machine, we brought it back and had it repaired again – only to have the same thing happen.

I had pretty much given up at that point, and returned to doing occasional sewing by hand, despite my strong desire to know this skill. It was just one more thing to remind me of how very incompetent I am, and believe me, I feel that deeply! But then I picked up a book from the library on teaching children to sew (I had no children, but felt that must be the level I am on – and if children can learn to sew, surely I have to be able to learn to do something.) It mentioned in choosing a machine, to look for one with a drop in bobbin.

Ahhhh! Now I had something to look for, and asked my husband to look for that type of machine for me. One day he brought it home. That was right at my 38th birthday (meaning my son had turned 18 that year.) And would you know it? Every time I have tried to sew something, it has worked wonderfully – every time for eighteen months!

Here I was fully believing I was incapable of ever learning how to use a sewing machine well – and okay… I admit that I must be incompetent in threading a complicated bobbin – but that, most certainly, is not the same thing. It only took me eleven years, and a whole lot of self-doubt and frustration to figure out.

 
 

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Autism: All Encompassing Failure

It isn’t like I have failed at everything. Even the things I have failed at, I didn’t always do poorly with. It just feels like that. It feels like the world is constantly reminding me of my failures… and that is hard, since I am already constantly fighting the demons that not only remind me of my failures, but make them all seem that much bigger than they were to begin with.

Take my children, for instance. In my mind, that is the biggest failure of my life. I am reminded by several people that I didn’t actually lose my children – the adoption fell through. While I know that is true, and it would make a difference if I thought that way for other people, it still feels as much of a failure to me as if I had lost my children. After two and three years, they sure felt like mine.

But when I think about being around children now, I have no confidence. It is as if I have never been good with children, and could never be good with them in the future. Even though I know that is not true.

Before we tried to adopt, I not only had my son (who was happily homeschooling, and doing well) but I also ran a licensed day care out of my home full time. After graduating with honours from a two year early childhood education program in college, I opened my daycare, and looked after 5-7 children each day in my home.

It was not babysitting. I had a full program for the children, which I planned out in quite detail. We had stories, songs, crafts, baking activities, science activities, outside time… I played with the children, and took good care of them. That isn’t just my opinion. Most of the children in my care were excited to come to daycare each day. Most of the parents were happy to bring their children to me. As far as daycare went, I think I did okay. (Those that weren’t happy was most exclusively about scheduling – because I was alone with 5-7 children, several of whom needed me in the room with them as they fell to sleep, I could not accommodate young children on different schedules.)

And then we tried to adopt, and for two years the social workers, doctors, specialists, and foster parents were pleased with the care we provided… until they weren’t, and over a year the adoption fell through. Those moments have become so large in my mind, that it seems to define all of me – even when I am told that is not true.

After the adoption fell through, the ministry continued to have some supports in place for us to help us with the loss (not enough, but some.) It was through those supports that I was encouraged, with the social worker’s knowledge, to return to providing child care to other children.

It never made sense to me that they could take my children away, leaving me to feel like a horrible person, and yet encourage me to work with other people’s children. I still can’t understand this. However, after a time, I did start to provide child care again. And once again, both the parents, and children were happy with the care I provided.

daycare

I never could shake that lack of confidence and feeling of failure that came from having our “adoption fall through.” I was a childcare provider for nearly another year after that event, and chose on my own to move to a different job when those parents (for various reasons, not one having to do with the care I was providing for their children) stopped bringing their children. My reasons were mainly threefold.

  1. I was working long hours for little pay. Since I was not licensed at the time (and didn’t have the confidence to get my license again) I could only care for two children at a time, which wasn’t enough to cover the bills.
  2. Succeeding with other people’s children, only reminded me how wrong it felt that my own children had been taken away.
  3. Having children that had been in my care leave, though all due to the parents work situation and not my fault, hurt every time. I don’t handle change well, and while it takes a lot of effort for me to connect, I do in fact connect to the children, and that loss hurts. That is why I wanted to adopt – so they wouldn’t be taken away.

Yet despite how my successes “sandwich” my failure, the failure remains to be what is forefront in my mind. It not only stops me from trying again, but leaves me feeling guilty for wanting to. And that is how it is with everything. My confidence is something that is easy to break, and I may never overcome being told that I have failed.

 

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Autism: What About Those Days?

Perhaps I shouldn’t be writing as often as I do. It has become a compulsion to me – something I must do, even when I don’t want to. I suppose it is a decent exercise – to write every day – that I will learn, and become better at it. At least that is my hope, and the encouragement which I have heard. But then, is it always appropriate that my writing be published?

For I do write every day. I would write every day, even if I didn’t publish it to my blog. I write in my journal. I write letters to myself. I write down plans and inspirations. I do write every day.

I also know that while I like some of what I publish to my blog, there are those days… the ones when I am so anxious, or so distracted, that my thoughts don’t flow properly. I read my words, and find that some sentences just don’t belong; or that I know what I want to say, and feel it would be a good topic to discuss – only it doesn’t come out right.

And perhaps if I were to alter this compulsion of mine, so that maybe I chose to publish three times a week, instead of six, maybe the writing would become better (and not fill up people’s in-boxes.)

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At the same time, I wonder if writing less, would cause me to hide more. What I want to share in this blog is truth. Truth about who I am, and the struggles I face, so that maybe – if just one person reads what I have written, and is able to relate – maybe others will be comforted by the thought that they are not, in fact, as alone as I often feel.

If I chose to write less (or at least, publish to my blog less) – especially with the fact that I consider this my work – would that be another failure on my part? Another attempt to reduce any sense of commitment on my part… another choice to run from anything that might bring me a feeling of shame or failure?

It is hard for me to know what is the right thing to do. It is even harder knowing that what is right for one person, is not right for another. So how do I know? How do I know if what I am doing is the best thing for me, or if I am just running again? And how do I choose, when I know that many of my choices in the past have been wrong (and I have spent the years since regretting them?) Is it any wonder that every decision causes me anxiety?

However, I am thinking at this time, as I reflect on those days where I just can’t seem to write to the best of my ability, that I should reconsider this compulsion, and maybe be easier on myself by allowing some days to slip by without posting to my blog. Only even now, I don’t know what I will decide. What will win out – the reality, or the compulsion? Only time will tell, I suppose.

 
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Posted by on March 21, 2016 in Autism: Out in Public

 

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