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Monthly Archives: February 2017

Autism: Triggers

It was a Saturday afternoon, and we were sitting in the waiting room – my son and I. His small kitten meowing loudly in the crate on his lap. The appointment had been set. It was just a routine post adoption check up, coming just days after we brought Nicholas home. The day was snowy, the roads scary; so different from that hot summer day eight months ago (has it been eight months already?)

We sat in the waiting room at the vets office, and it was not lost on me that my son and I (by no preconceived decision) were sitting in the exact places that we had been on that day – and I looked to the floor where my dog had sat struggling on that day; that horrible day when I brought him in to save him, and went home in tears without him.

I looked at the floor half expecting to see him there still… and I did as my memory placed him back there. I did, but I couldn’t go back and save him. It wouldn’t have done any good – they couldn’t save him then. I looked at the floor, and expected to see the fluid from his lungs spreading out in a pool on the floor. It was an emergency – didn’t they see it? Why did they make us wait?

Trying to bring myself back to the present, I turned to my son’s kitten and spoke to his cries. “It is okay Nicholas.” It is okay. But it wasn’t. My heart was breaking sitting there, and I wondered if that place would ever bring hope for me again. I cried for my boy that I miss so much, despite the beautiful girls who have come to fill the gaping hole that he left behind. “I didn’t mean to leave you here, Gryffindor. I didn’t want to leave you.”

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I held it together until I got home, and then I fell apart. It took days to get over it… not really over, but to block it out again so it didn’t hurt so much. I used to be good at blocking things out – as a child – I had to be. The skill was dulled along the way, yet no less needed today. In order to live, I must be able to block these things out, but the triggers come. The triggers will come.

There was another winter day. I was working. The highways were closed in both directions due to accidents. Many people were trapped in town as they were attempting to drive through. The motel was filling up quickly. The entire town was filling up quickly, for there was nowhere else to go. I was alone at the front desk, with a lineup of people asking for rooms. Online bookings were closed, and I was given orders not to take phone reservations – there wasn’t time. First come, first served, and they had to be at our door.

I answered the phone only to tell people we had few rooms left – they had to show up. One phone call, a woman – “we’ll be there in five minutes.” Five minutes. Okay, I have a couple of rooms, and there was a moment of quiet. Five minutes. I can do that. “Good, I’ll have the social worker call to book it,” she said. “No! I am not able to take online bookings.” No time. I have my orders. I can’t do it. Dishonest.

Another call. “Are you going to leave these people out on the street just because of our little mistake?” Not mistake. I was clear. Manipulation. Lots of people being turned away tonight. Hate! I hate social workers. Hate them. So manipulative. Triggers. My father was manipulative, too. Really manipulative. As a result, all manipulation triggers me – even my own – and social workers, I have found, are the worst.

Tears, all night. Anger. Trauma. Two separate incidents (my childhood, and the loss of my children) that I still fight PTSD because of – and manipulation triggers them both.

Phone calls. Certain smells (like the smell of cigarettes on the clothes of smokers). Places. Moments when I feel overwhelmed (that happens a LOT!) Feelings of hopelessness, helplessness, powerlessness (like seeing videos of factory farming and animal cruelty.) Stories of evil. People dismissing my activities as not having value because I don’t get paid for them – judgment, criticism. People dismissing my struggles as unreasonable. Places that remind me of pain. All triggers.

And as I experience life, the triggers grow. I am less able to deal with life now at 40 than I was at 15, though I was being abused then – and my husband, though he does not understand, and though he dismisses my pain as unreasonable, is not a cruel man.

The triggers come, and I am overwhelmed with pain, and sorrow, and fear. It takes me days to block it, and I am only successful when no other triggers come. Just trying to hold on. Hoping I can hold on. Fearing I won’t survive it this time. Just trying to hold on.

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Autism: Less is Better

The tears have been flowing for days now, it seems. Yesterday I was exercising on my elliptical machine with tears so heavy I could hardly see. “I can’t. I can’t do it,” I cried over and over. “How do I carry on in a world with so much evil?”

The battle has been strong since I first realized the connection as a young pre-teen. It has grown stronger with age. It becomes overwhelming in times of loss.

Animals have been the best of life for me. The absolute best. In my hardest moments, they were the ones sent to carry me through. Animals. Not people. God knows that they are able to reach me in a way that people never could. That they give me comfort when people bring me fear.

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And I know with absolute certainty that my love, and their spirit that speaks so well to mine, is not limited to cats and dogs. Lambs, goats, horses, cows, chickens… pain even comes for the ant crawling on the ground, or the bee that didn’t quite make it to the flower, or the wasp drowning in the pail of water. I can’t leave them to die. And when the spider is squished on the wall, something inside of me screams murder!

So I see them taking so much more than they need, and it fills me with anger. And I eat what is given to me, and it fills me with pain. How could I? How could they? How could this ever, ever be okay? It eats away at me as I have eaten them, and I can’t. I can’t do this. I can’t do it anymore. It isn’t who I am.

And I turn to what I know is right, even if it is different – and every meal with them feels like a battle. “If you won’t eat it, that means more for me.” No!!! Please no. Why can’t you see what your response does to me? Why can’t you see? How don’t you see it?

Eat it if you must, but don’t eat more. Never more. Less is better. None is best. But don’t eat more when I stop having any. It isn’t right. It isn’t fair. You attack me with that response. You punch me in the gut without ever laying a hand on me, and the pain eats away at me. Eats away. Eats away with the ‘food’ you are eating.

And I get angry, and you don’t understand, and I haven’t the words to express myself without you becoming offended. Everyone is offended these days. How do we find the words to speak what we must say when it is so often seen as offensive? But this is my hurt I am trying to explain to you. Mine, not yours.

The posts and the videos come, and I know it is true. So much pain. So much suffering. So much evil. That is what I see. Evil, the way they are treated. Evil the greed with which we consume. Evil. And it hurts me deeply, and I do cry.

I look in their eyes, and see love. I look in their eyes, and see pain, and fear, and it breaks me. It breaks me. And I feel so hopeless, so powerless in the face of so much pain. And I think, “I can’t. I can’t live in a world with so much pain and suffering.” And why?

Eat it if you must, but don’t eat more. Less is better. Consider the cost.

And I say “Vegan,” and they ask, “Why?”

 

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Autism: If I Were Well

It had been a really rough week. Hard to believe two weeks had past since we lost my son’s nearly nineteen year old cat. The pain was raw, and everything bothered me. I get like that when things hurt; my already sensitive nerves are overwhelmed by every little thing.

I spent the day before steaming with anger and frustration over things that I was unable to express. Communication is hard at the best of times – and this was not the best of times. It isn’t that such things only bother me when things are hard, but that the irritation I am able to suppress and redirect when I am well (knowing that I am very sensitive about such things, so it really isn’t the fault of other people) wants to come out in an explosion when my functioning is low.

The struggle didn’t get shared, however. I am getting better at holding it in until I can find some way to solve it, or express it better. Since my ability to express myself still isn’t close to the level where others can accept what I am saying (or even understand my point) I often find myself holding so much in that I am at the edge of being overwhelmed nearly all the time. The tiniest things can throw me over… even then I rarely explode, but do spend a lot of time alone and in tears as a result.

Though the plans had already been made, I still woke up that morning full of frustration over the things that had bothered me the day before – again, more because I couldn’t figure out a way to solve or communicate the issue than that it was actually the fault of another that I was feeling that way.

The plans had been made with my son, however, and were really important to him. We were to go downtown for a few necessary supplies, and then head out to the local SPCA with the hopes of adopting a cat.

I guess he learned that from me, and I in turn learned it from the loss of my Chiku. I got Chiku a week before my son was born, and she died a week before she turned 16. In the part of my life that I remembered, I had her longer than anyone at that point, and the loss hit me hard. They always do. I was determined that I would not get another cat as the pain was too much. That is the year I ended up adding three new cats to my home!

Then when I lost Gryff last summer, I knew I needed another dog. The pain was intense, and I could hardly even get up when Clara was given to me 15 days later. It hurt, but I knew she was necessary. So when my son lost China, the first week the pain was too much, but he knew that he would need another cat. He learned that from me.

I didn’t think it would be so hard to find a cat at the SPCA (there were 5 he was very interested in from the ages of 2years to 13years old – all were gone before we could even think about getting there) and I didn’t think it would be so easy to adopt a cat from the SPCA.

On the Friday afternoon, six kittens had been posted on their site, and three were gone right away. The three left were brothers, and all three had the personality my son was looking for – so we got there on Saturday half an hour before they opened, and waited in the car.

My husband came with us for all of this, and though in my mind he spent most of his time in the background, the very fact that he was there helped to calm me. He does that – especially when I am out.

In the main room were four kittens, two of them already spoken for. They were really cute – 10 weeks old, and very energetic and curious. My son and I spent quite a while playing with them before asking to see the other kittens we had come for.

We were taken to another room where we were greeted with meows from a small orange kitten. The two orange ones were also spoken for. My son walked over to a cage that was open, and a black and white kitten came straight to him. “He is usually very shy,” the worker said, “this is very unusual.” My son and that kitten spent the rest of our visit together, while I played with his brother, and pet some older cats in the room.

Obviously he is the one we decided to bring home – a six month old tuxedo named “Rocky Road.” (My son changed the name to Nicholas.)

And you know? Despite the pain, and the grief, and the frustration, and all the negative emotions and struggles I was feeling leading up to that moment, I really enjoyed spending that hour at the SPCA playing with those cats. And I thought, “I would love to volunteer here… if I were well.”

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Autism: What is Reasonable Anyway?

Unreasonable. It is kind of like the word “picky.” A collective agreement about what is right and wrong; what is good and bad; all based on the typical preferences of the culture around us.

I have been considered ‘picky’ my whole life, because I don’t like the typical foods eaten by those of my culture: Pasta, hamburgers, hot dogs, sausages, Kraft Dinner, meatballs, mushrooms… and because many typical foods make me sick: eggs, dairy, wheat…

But those close to me are not considered ‘picky’ because they do eat those typical foods – yet don’t like much of the foods I do like: cauliflower, Brussels sprouts, baked eggplant, kale chips, millet, lentils, pumpkin, tofu, black beans…

Just because their foods are typical, doesn’t mean they are good; and just because I don’t eat their foods, doesn’t make me picky. Conclusion: their labels are wrong! It is like the story of the twins that were adopted to different families: One parent said, “My daughter is so picky; she won’t eat anything unless I put cinnamon on it.” The other said, “My daughter eats well; she will eat anything as long as there is cinnamon on it.”

That takes me to the label ‘unreasonable.’ Being reasonable is a virtue – but what determines what is ‘reasonable’ but a collective agreement on what is typically acceptable? This means that those of us who are… different in our needs, are seen as ‘unreasonable’, and so those around us who seem to pride themselves on being ‘easy to live with’ because they are ‘reasonable’ really aren’t easy for different people to live with because our requirements to live well are not typical.

I have been thinking about this a lot lately because I am having an ‘unreasonable’ issue, and don’t know how to communicate it. It really began when I switched rooms – which in many ways has been very positive for me, with the exception of this thing: I can’t share bathrooms. I can’t do it.

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When I was in the Master bedroom, we had an en-suite My husband didn’t really use it. It was my bathroom. I liked it because it was small, and private, and guests wouldn’t use it. My husband would only go in there when I was in the shower (the en-suite is only a 2-pc bathroom) – which also upset me for several reasons, but…

Once I moved out – and the reason I stayed so long in that room was because of the bathroom issue, not to stay in there with him – he started using that bathroom, too.

I understand that it is ‘reasonable’ for families to share a bathroom. I know that many families have no choice. The thing that has always been true of me, however, is that this is an exceptionally stressful thing for me to do. I just can’t.

There are three of us living in this house with 2.5 bathrooms, however. Is it therefore unreasonable for me to have the half bath for myself in order to reduce the extreme stress I feel on so many levels from having someone use ‘my’ bathroom (I don’t want to go into the details, for it is those details that stress me out.) Or does it make my husband ‘easy to live with’ when it (reasonably) doesn’t bother him to share bathrooms, and so he will use them all? I don’t use his bathroom, with the exception of the shower (as there is no alternative) which I often clean while I am in there.

True it would make more sense if that were my bathroom for me to remain in the master bedroom (which isn’t much larger than the others), but I didn’t know how to communicate that, either.

It is much like other issues I have:

  • Sensory issues like the smell of sausages cooking in the morning, or mushrooms cooking ever.
  • Allergies to eggs and Kraft Dinner, meaning these foods cause panic attacks when they are being eaten around me (and both, but especially the KD, cause strong issues when airborne, too.)
  • Food issues that mean ‘my foods’ have to remain mine – so I don’t go to eat something only to find someone else has eaten it, or cross contaminated it with other ‘bad’ foods.
  • OCD issues, like the disgust I feel when bugs are mushed on the walls, or someone has touched the taps with dirty hands.

With my Autism, and OCD, and severe sensory issues, and… I admit that I am not easy to live with. I know this. But the very fact that other people seem to believe that because they are reasonable, they are ‘easy to live with’ means that every different request I make, or every different need I have is my problem and my problem alone (and therefore every conflict in our home is my fault because I am ‘unreasonable’.)

All of these things, though not typical, are nevertheless true. And the thing is, with my challenges with communication – and my knowledge that I am not easy to live with – there are a huge number of things that I struggle with which I never share. Others believe they are reasonable, because they are typical – but is it truly unreasonable to ask for modifications (such as allowing me to keep my bathroom in a home with three for three people) for things that I really do struggle with?

That is, after all, the main reason I went for diagnosis: that others might be able to see that what seemed unreasonable actually wasn’t in light of my very real struggles.

 

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Autism: Inspirational Day

A couple of days ago while I was on the Realtor website (I go on there a lot) I got… bored looking at the same few houses that might be in our price range where I live. As I mentioned, I go on there a lot, and I keep the search pretty much the same: Freehold property, 2+ bedrooms, 1+ bathrooms, priced up to $275,000.

When we bought our house thirteen years ago, it was the most expensive house we looked at, and over our budget by about $5,000. We put our offer in at a few houses before this one, but they were selling fast at the time. Our house: 3+1 bedrooms, 2.5 bathrooms, fireplace, carport, deck, view, full finished basement, freehold property. We paid about $160,000 and within months had a call from a Realtor asking us to sell as people wanted this neighbourhood specifically. The price then (less than six months later)? $250,000. We didn’t sell, obviously.

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Now, however, I might have six properties come up with my search, and none of them are anywhere near what our house is: 2 bedrooms, 1 bathroom, 750 square feet, half our yard size, no basement, no carport, most have no fireplace or wood stove, maybe built in the late 40s or early 50s (ours is 1980 and 1149 square feet on each level.)

So the same few houses come up, and the cost is high (we wouldn’t be saving much after Realtor fees, transfer taxes, and all other expenses included in moving) and none of them are quite what I am looking for… not that we are planning on selling, but if we were, I like to be prepared.

I expanded my search. I do that sometimes. The thing is, though, that housing in BC is expensive, and in the entire province there isn’t much available in our price range (pretty bad considering, as I said, our house was the best of all we looked at when we were buying, and we looked at many.) Often if BC doesn’t work, I turn to Ontario – that is where my family lives. Only the hydro prices in Ontario are astronomical, and I know we couldn’t afford to live there, even if (in some areas, not really close to my family) houses might be cheaper.

I would say, “I spent the day…” but I didn’t really, for it was cleaning day, and I was quite busy around this activity – but I was interested, and so did spend a fair bit of time on the activity.

My search was Canada wide. Not that we could move, really – for my husbands family, friends, and life are here. He needs that support, even if I don’t have it so much (that isn’t his fault; I moved here before I met him.) In order to not be overwhelmed with the results, I tightened my search: Freehold (always – I have too many pets to live in a strata, plus the fees are too much) 3+ bedrooms, 2+ bathrooms, garage, fireplace (I would say wood stove, but that isn’t an option), acreage.

I was surprised to see 89 results in Nova Scotia and New Brunswick. I suppose I shouldn’t have been so surprised, but some of those houses were beautiful! Not that I ever considered living in the maritime, but my sister in law has family there (so they have gone there to visit, though in the nearly 17 years I have lived here, they have never come here – even for my wedding.) My younger brother has a friend there, that he (and my mom) have gone to visit a few times. And the housing is cheap… mostly because there isn’t much work there, I assume.

The houses though! All day I kept going back to them. Such inspiration! You see, I really did like my job at the motel, only it was overwhelming, and I couldn’t deal with… the ‘difficult’ people. They would put me into a full panic attack, as would the amount of work I always had to do.

Several of these houses said they would be suitable for a Bed and Breakfast. I couldn’t run a bed and breakfast; I haven’t the personality – but perhaps I would do well with some long term rentals, or something like a very small motel, or… something. There are things I could do, that are even related to work I have done – if only I had the opportunity. But I would have to live where I worked. That is an essential for me.

I really did love the character of many of those houses. I loved the properties, and the space, and some had spectacular views of the ocean.

The entire day, I never made it past $150,000 in price, there were so many houses for less. We could buy there and have a lot left over… of course, we couldn’t move there… there is my husband with his supports, and there is my son, who would lose his disability if he left BC… I couldn’t go, but I can dream, and it really was inspiring to look at those houses.

 

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Autism: Benefits of My Own Space

There was a fun type of game going around Facebook for a while that said to open up your phone (I don’t have one) and click on the middle suggested word twenty times in a row. I was always tempted to try this, but since I had no phone, and my tablet was not near me at the time, I never got around to it – until today.

I am not sharing this on Facebook, but I found my result quite funny, and wanted to share it here. Keep in mind that I am neither fluent in Spanish, nor do I write in Spanish most of the time – but I must use the automated suggestions much more for Spanish than for English; I have been learning Spanish on Duolingo.com for a couple of years, though I got out of the habit nearly a month ago when my routine was changed, and I broke my streak. It is very easy for good habits to be broken for me, and very difficult to get back into them.

All that to explain what I wanted to share. The result of my ‘twenty suggested words’ was: “yo no rechazo a la gente que no tiene nada que ver con el tema de la compra de la casa de la abuela,” which means, “I do not reject people who have nothing to do with the issue of buying grandma’s house .“ (the “a la,” and the “de la” came up as single suggestions, and the phrase ended in “y” (and) so I left that off.

So I guess that is my new motto for life, “I do not reject people who have nothing to do with the issue of buying grandma’s house!” Funny. I laughed so loud, my son had to come up and see what was going on.

I don’t believe that was ever a phrase that I had to translate in my Spanish course, though it sounds like one they would have – like one I translated a lot in the beginning of the course, “Mis elefantes beben leche.” (My elephants drink milk.)

Speaking of Spanish, I am really enjoying being back in my own room. I sleep better, I wake up feeling better, and best of all, I am getting back into good routines.

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For instance, the first thing that came back after moving into the ‘pink room’ was that I started practicing my keyboard again (which I got out of when my brother in law stayed in that room last September.) I thoroughly enjoy it while I am practicing, and spend the rest of the time with worship songs playing through my head (for that is the book I am practicing from.)

Later that week, my husband bought me an ellliptical machine from the thrift store where he works. It is huge and bulky in our living room, and squeaks really loud when I am using it, but I love it! I use it in front of the TV while streaming documentaries on my Chromecast from Netflix. (Wow, there were a lot of words in that sentence that I never used up until a short time ago!)

I am walking my dogs again – though I admit that has so much more to do with the warmer weather than having my own room (it has been hovering just over 0 Celcius this week as opposed to the -10 to -15 Celcius we have had far too long this winter.) Even Clara walked today as the roads were nearly dry for the first time since about November.

Best of all, I am dreaming again. Being in my own room means I can be (pretty much) on my own schedule. It isn’t so much that I am up later than him or anything, but that I am not wondering every moment when he will come in and watch me until I am finished with what I am doing. (Maybe I just felt watched – I always do when someone is near me, but still…) so I am able to focus entirely on what I am doing, and transition on my own terms.

This was a really good move for me!

 

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Autism: Should Have Learned

Today I went back to edit a post I had written a couple of days ago. Thankfully it hadn’t been released yet. Thankfully I had the time (and wisdom) to really think about it before the information was shared. I had even written about how years ago, when we had our `foster` children, I had shared too much in the emails between myself and the ministry (as well as between myself and an online special needs support group I had been a member of.)

I have a tendency to share too much information – it is difficult for me to understand that not everything needs to be shared, even if I know that to be true.

It is difficult for me to leave out details, for how do I know at which point the omission becomes a lie? How do I know what points of what I am sharing are helpful to other people, or what parts I would be condemned for leaving out?

Since people tend to misunderstand what I am saying, doesn’t it make sense that the more details I share, the clearer my message should be? Yet when I share everything, it seems that people misunderstand me more – as if I am sharing all of this information to hide something else, when in fact I am sharing all this information to try to ensure that all information is shared.

They even try to “read between the lines,” when for me, there is nothing between the lines – maybe that is why they seem to respond better to me when I say very little, for then there is nothing more to look for… I really don’t understand it.

I do know that other people don’t share everything – I just don’t know how I could do that for myself. It feels… manipulative and dishonest.

Yet the information that I edited out of my old post were specific details on what behaviours my children were struggling with the summer before our adoption failure – and I realized as I thought about that how it might be hurtful to my children (who still live in this community, though I don’t see them) if those details were shared.

I wrote, when I had my children, because I was trying to get other people to understand, and because I was looking for (unique) suggestions of how we might help our children better. Instead, I apparently overwhelmed those I was writing too, who believed (unfairly) that I was being negative about my children, and really wished we hadn’t tried to adopt them (untrue.) So they ‘helped’ based on how they interpreted my emails, which really was completely off the mark.

I write now because for so many years I felt alone, and as if everything about me was wrong. Then I found out I had Autism (or more specifically, Asperger’s) and thought that by writing this blog, I might help other people to not feel so alone, or that everything was wrong with them, or…

I write to help – but I still share too much, and I wonder… will all of this be taken wrong, too? In trying to reach out, am I actually isolating myself further? I really don’t know the answer to these questions, for as I said, I really don’t understand.

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