Monthly Archives: August 2016

Autism: These Days

The days come upon me suddenly and unexpectedly. There is often no warning the night before that anything might be different when I wake up. It just happens. And if I have obligations that take me away from home, or people around who interrupt, it becomes more frustrating than I can express. It doesn’t even happen often, maybe only a couple of times a year; more if I am lucky. If I don’t, or can’t take advantage of it, the moment passes, and may not come again for months.

It happened this week. When I went to bed, I was extremely anxious and depressed. That is pretty common for me, but that night was worse than the few days on either side of it. It took me a while to cry myself to sleep, and even then, my rest was fitful.

I woke up at my normal time (well, normal now that my new dog chooses to wake me up to get outside, and have breakfast, where Gryff would wake my husband and let me sleep) and as I woke, I had a sudden desire to move things. That desire was so strong that before 9am, I was already in the basement trying to carry a dresser upstairs on my own – despite the fact that my son was still sleeping, and I knew he wouldn’t be pleased.

It wasn’t that I wanted to annoy him, but that I needed to move this dresser. The compulsion was so strong, that it drowned out all other thoughts. So I pulled out the drawers, emptied them, and carried them upstairs. Then I lifted the dresser to the stairs, where I slid it up the first flight, flipped it over, and slid it up the second. Of course, at that point, I had nowhere to put it, so I left it in the hallway.

The dresser was to go in ‘Finn’s’ room (the room my Siamese cat refused to leave for the first year after we got her.) But that room was being used for storage, and had the litter box, which had to go. What is the point in having a bedroom that can’t be used for guests due to a litter box? It didn’t make sense. It never really did, except when Finn lived in there. She has since migrated to the living room (of which, I am very pleased) and only went in there for that one reason.

That room was a mess, however, so I decided to start somewhere else. My husband didn’t like my dolls being displayed in our bedroom. He never said anything, but kind of hinted at it once about a year ago after I moved them in. They were on a set of cube shelves sitting on top of a vanity dresser with a mirror. So all of them were going out.

Down came all of the dolls, dusted and comforted (for being left on uncomfortable shelves… are they really happy there?) and put on my bed. But then, if they were going in the pink room, the entertainment shelf had to be moved. Out came all of the movies and DVD s, and piled on the bed and floor. The keyboard, chair, and stand also needed to be moved. Off they went to the side of the bed. The entertainment shelf wouldn’t move still, so out came more. I had to be able to lift it – why did I have to put carpet under it anyway?


Finally I got that out, but the mirrored vanity was even heavier, and wouldn’t go over the carpet. This I knew. So I flipped the carpet around while still under the queen sized bed, so there would be more room to move in the vanity without running over the rug. The entertainment unit was stored in my bedroom, at the end of my bed, as I moved the vanity into the pink room, and put the cube shelves back on top.

Of course, then I had to work at putting everything away again (while talking to my dolls – ‘do you want to sit with him?’ ‘did you like Winnie the Pooh, or did you prefer Mickey Mouse?’ ‘I am sorry, Moose, you have to go on the top shelf. I know, but you will have the Reindeer to keep you company.’…)

My son came up while everything was all over the place, as if an explosion had gone off. “What are you doing now?” he asked me (as if he were the parent, and I was the child.)

“I am cleaning,” I said.

“You are making a mess,” he replied. (What does he know, anyway? He doesn’t even like my dog…)

Well, those rooms got put back together again, with several hours of work, and I still had that overwhelming determination to clean out ‘Finn’s’ room and move the litter box

Poor Clara was stressed out, and peed on the carpet in front of me. Poor girl. I moved all the storage downstairs to the ‘playroom’ (which is now really where we keep the good TV that mostly my son uses – he wasn’t too pleased about the mess in there, either.) I moved the litter box to the main bathroom, where there is a large open area under the counter, and then I washed the rugs in both that room, and the ‘Pink’ room.

After cleaning the bathroom, I finally sat down. It was 4pm, and I had started at 8:45 that morning. That may not seem much to many people, but as I said it rarely happens for me. Not only don’t I have the energy most of the time, but I almost always shut down for being overwhelmed shortly after starting. Then these things bother me, and I carry them like a weight, until I get to days like these, and can finally relieve the burden. I am so thankful to have the freedom to plan my own time that I was able to get this done the very moment I was inspired to – for otherwise, it might never have been done at all.


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Autism: Don’t Think They Like Me

The feeling overwhelms me. I am not sure if it comes from a look, or a word, or a tone… sometimes the person isn’t even talking to me. Perhaps it is that alone that causes the struggle – but it isn’t like I am seeking the attention, or even want it. It is a thought. An attack, really. Yet I doubt if the person themselves even knows they have such an effect on me. It comes upon me quickly, and then I am filled with doubt.

Do they hate me?

What did I do?

It isn’t that I can’t think of reasons why they don’t like me, or what might have caused this issue. Perhaps the reason is that I can think of so many reasons.

Do I need them to like me?

It isn’t like I even see them all that often, even for the fact that some might be family, or some might be people I see weekly – but don’t talk to. I really don’t talk that much, and it is not like I go up and start conversations with them. Ever.

So why do I need them to like me? Why does it hurt so much when I even think they might not?

If they did talk to me… it isn’t like I would be any less anxious after. I would pull it apart, and analyze it, and continuously remind myself of every awkward thing I said or did. I do that. It is as if all of the people I like (and I like most people – even if I show it poorly) are celebrities, and I have little right to be found among them. But they don’t know that I feel that way about them – and I know I am not supposed to feel that way about them… even if they were famous, which none of them are.

We are not supposed to fear people. “What can man do that I should fear him?” Yet I do. I do.

For people upset with me have taken my friends, my dreams, my children. It may be that my life is like a blade of grass that withers and dies – nothing compared to eternity – but in this moment it feels like something, and all those somethings that people have taken from me hurt right now.

So I stand there amidst them, and they talk to me, or to my husband beside me, and I think, “you don’t like me.” Or they don’t talk to me, and I try to remember the last time they did. And probably they aren’t thinking of me at all. Who am I that they should think of me – and if they did, would I want them to?

The problem is, I can think of so many reasons why they might be angry with me, or why they might not like me – yet still I wonder, “What reason do you have?”

Did I share too much?

Am I not who you thought I was?

Am I doing it wrong again?

Did you reconsider something in the past, and judge me guilty this time?

Do you not know what to do with my diagnosis?

Does it seem I am attention seeking?

Is it that I am not working now?

So many reasons – and I know I am not supposed to be afraid of them. And I know that I am not supposed to find my worth in them. And I know it is not supposed to matter. But it does, and I am – and the very thought that they don’t like me fills me with shame. I know it is my fault – and I am so, so sorry.

And the tears flow while I am hiding in my house – and they never know they effect they have on me. What will they take away next?

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Autism: Family Time

It has been a good couple of days. Don’t get me wrong, I like visiting with these people – and am amazed by how often we see them, considering they don’t even live on this continent. My own family I hardly ever see, though we could drive to them in five days, or fly there in five hours if we had the money.

The first night we were here, we drove to the beach. Maybe five minutes from our house, and so beautiful – on a clean lake, surrounded by mountains… we live in an amazing part of the world. Just five minutes away, and we never go. I’d like to go, but… well… it is easier staying home, and the anxiety gets too strong, and my husband is too tired, and my son doesn’t like to leave the house, and…

We sat at the beach with our visiting family for about an hour. Maybe a little more. I waded a little, but didn’t swim, as I had my dog with me. She doesn’t like the water, and was even trembling up in my arms. The water was warm, and free of weeds – just as I like it. The beach was sandy, and soft on my toes. We sat at the edge of the beach, on a grassy hill, and just enjoyed the moment – watching the birds soaring on the breeze, watching the swimmers, and the boats going by, talking, and laughing, and watching the trains go by just behind us. It was a good evening.


Yesterday, my husband was at work. His brother asked if I wanted to go along on their trip to the waterfall, and a hike above it after. My initial response is always, “No!” Stay home, be comfortable, calm the anxiety. Years ago I decided that wasn’t the best answer, and that in a moment like that my answer should be, “Yes.” It is a conscious decision every time, and definitely goes against what I feel in the moment, but I am often glad that I went (once it is over.)

The waterfall is a little over a twenty minute drive from my house. We park, and then walk through this valley filled with trees and other vegetation, and mountains on each side. Even on a hot summer day, it is often cool in there. We follow the path along the stream, until we reach the rushing waterfall on the other end. The sound of the water, and the smell of the forest… so calming, so soothing – even when there are many other people around (which there often are.)

On the other side of the parking lot, there is a trail that leads up above the falls. Though we have taken that trip at least yearly since I moved here sixteen years ago, and often more, I have never done the hike above the falls. My brother in law said he last hiked it with my husband – but my husband’s knees have gotten bad since we were married, and he can no longer do such hikes.

The way up was steep, and I am not used to the climb. I struggled to breathe, my chest and shoulder kept sending out sharp pains, and my face was overheated. I was afraid that I wouldn’t make it – that either a heart attack, or a fainting spell, that would send me down the steep slope to my right would end my life. Mine, and my dog’s with me, as I was carrying her up the hill (she’s only a little dog after all – and even if she could have walked it, the drop made me afraid to let her try.)

I didn’t say a word. I often don’t. I just followed along beside praying that I would make it. Not that I was afraid to die so much – these days situations I think I might not survive leave me thinking, “I’ll see Gryff soon,” (Gryff is my dog that I lost just about 2 months ago.) But it wouldn’t have been… polite?… to die there and leave my brother in law to explain that to my husband and son. Plus there is my son I would be leaving behind – and I don’t want to do that to him.

Obviously we made it – and the view, and the smells, and the exercise were worth it. I was glad to get home, but was also thankful that I went – against my very strong inclination to decline (especially when my husband wasn’t coming, too.) I rested for the afternoon, and in the evening, we played cards. So much fun!

I enjoyed the visit. I most always do. However, I am really looking forward to getting back to the way things ‘should’ be: To my routine. To my diet. To quiet. For I can’t be me when other people are around, and it is so, so, exhausting – and I can already feel myself crashing, and being pulled towards those fixations that help to calm me: drawing floor plans, spending hours on Pinterest, researching and planning things that I will likely not follow through on… living.

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Posted by on August 24, 2016 in Autism: Out in Public


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Autism: Productive Procrastination

When I wake up in the morning, I have the best of intentions – I really do – and I start well. The list is in my mind, and what is on the list does need to get done. So I must. I will. I am so sure that although I will be busy and overwhelmed, I will get it all done, that in the beginning there is no room to think of anything else.

And some days I can. Some days. Like when I decided that I was going to paint my kitchen. The first day went exceptionally well. The second day even was good. By the third I was crashing, and there was still so much more to do. I did finish what I had set out to do. Then I crashed. Bad.

That was back in November 2015. It is now August 2016, and I haven’t had a day like that since, let alone a week. It isn’t that I haven’t wanted to, just… I am still so exhausted thinking of it. And while I do like the colours, it has already started to chip away, and it leaves me wondering why I tried so hard to begin with.


It isn’t like I have the skills, or the right materials, or the right tools, or even the patience to get through the entire process and ensure it is done well. It is just that it needs to be done. No one else is going to do it. We can’t afford professionals. And try as I do to ignore it as my husband does (I am beginning to realize that it is more likely that he doesn’t notice in the first place than that he ignores, but I can’t imagine this!) These things – each and every detail of them – are so loud and overwhelming to me that it doesn’t even compute that other people may not see it…

Anyway… what I had planned to do today wasn’t even close to that. Just a small amount of re-organizing (very small – I found out our guests only need the one bed, and we do have a guest room. I just needed to pull the bed away from the wall to make it easier for two people to use it.) I had to move a few things into the closet, and some others down to the storage room. Then I needed to clean.

Well, I started well! I cleaned out the pink room (guest room), moved stuff to storage, vacuumed the house, and washed the floors downstairs, and did some laundry. But then…


All I did was slide my fabric bin to a new location. It isn’t even like this is something I do on a regular basis, or something I am particularly good at. Still. Fabric.

I had this idea that since the dog sling I had ordered somehow got lost in the mail (I got a refund) that I would make one instead. I found the instructions I planned on using a couple of days ago – but I still have nearly 3 weeks before I need the sling, and my guests are coming tomorrow!

Didn’t matter. I saw the fabric bin, and had to stop everything to make that sling! So I went through the bin to find a suitable material of the right size. I took out my iron and ironing board, and ironed the hems. Then I pulled out my sewing machine, and went to it.

It was kind of enjoyable. Okay, I really liked it! Then I tried it out, and it seemed to work as it was supposed to. So back to work, right? No.

There was also Clara’s life jacket Well, it wasn’t bought for Clara. I ordered it for Gryff back in April. Only it didn’t come in. Then he died in June, and I was glad it didn’t come in. I got a refund. But Clara came, and I would need a life jacket for her – but there wasn’t time to order one. And wouldn’t you know – the life jacket came in – in July! I cried. Poor, poor Gryff. How I wished he could come camping with me. How I wish it still.

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I paid them for it. Only it wasn’t bought for Clara. It was bought for Gryff, who was a few pounds, and a much thicker coat larger than her. It was too big. She couldn’t even walk in it, as the belly strap went from her front legs to past her back. I mean, Gryff was only 10 lbs – and Clara is maybe 6. Not a lot of difference, but…

So I shortened the belly strap by nearly half. It still covers most of her belly. But the neck was too big, and she could just step out of it. It isn’t like I could send it back. So of course, I had to work on that, too. I shortened the neck straps, took out some foam, moved the buckle, and sewed it all back together again. It is solid, and it definitely fits better.

It is just – I had three weeks before I needed that, too, and our guests are coming tomorrow.

So it was a productive day, but the things that were supposed to get done, didn’t. It is as if I have no control. But I sure did enjoy it!


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Autism: The Way it Goes


When I went to bed, and when I woke up, I knew this was going to be a busy day. An anxious day. An exhausting day.

“When _______ come into town, are they going to want to stay with us?” I asked my husband a few days ago. “I don’t know. I never thought about it,” he answered. “Probably.”

Details. I need details. Who is coming? When are they coming? How many will be staying here? How long will they be staying? Where will they sleep? Where will my husband sleep? (he tends to leave for another room sometime during the night.) Where will I put the litter box?

Come. By all means, come. Just… I need the details… and time. Time would be good.

So maybe they will be coming tomorrow, or maybe next weekend, or maybe not at all, or… So I’d better be ready for tomorrow – and then clean everything every day from now until the end of summer, right? It isn’t that my house is all that messy… most of it anyway.

But then one room upstairs is used for storage – and the cat’s litter box. I don’t know where else to put it, because I can’t handle walking on litter – and one of my cats won’t go downstairs (it took a year to come out of her bedroom, it is not like we will train her to go downstairs in a day or so.) Plus my son’s cat won’t let the others downstairs. We have a bed in that room, but we can’t put someone in there with the litter box in there. What other option is there?


And then there is my new dog. She uses a potty pad. I had never considered using one before. The thought never even crossed my mind. It isn’t that I mind that she uses it, and I really saw the wisdom in it when it poured for the first few days after we got her, and taking her outside… well, she is so tiny, and gets cold really fast. Anyway, she does go outside most of the time – just not always. So when she started going in one spot in our dining room, the pad was put there.

Well, that had to be moved. I knew it from the beginning, but how? And where? The only place I could think of was my bathroom – a small powder room about 4 foot square. There was a place for it in there, but I had to move some ceramic tiles that were piled there collecting dust.

Only when I got in there, I saw my loose medicine cabinet with a mirror… “Didn’t (my son) want a higher mirror?” I thought… so everything got pulled out of that, and piled on the bed. The mirror was moved. My son’s bathroom then had to be stripped, cleaned, and rearranged. Then my bathroom…

What was I going to do with the tiles? I brought them home from the thrift store a few years ago thinking I needed new flooring in the kitchen, or the bathroom. There wasn’t enough for the kitchen, so I brought them to the bathroom – and many, many times tried to arrange them in a way I could use them in there. The thing is, some needed to be cut to fit. I do not know how to cut tile, don’t have the right tools if I did, and am incapable of asking for help to complete my idea. So there they sat.

Knowing I had a lot to do today, what did I do with those tiles? I sat for hours in that little bathroom, trying to rearrange them to fit. Somehow. Suddenly it was after 1pm, and all I had done was carry a mirror downstairs. In my mind I kept thinking, “What am I doing? I don’t have time for this.” Yet I couldn’t stop. I just couldn’t. Fixated and perseverating – for what? I knew I would end up moving them to storage in the end, and nothing would be accomplished, yet I kept going.

Well, it is now 4pm. I started all of this at 8:45 this morning, and have been really busy all day. Yet what has been done? Three bathrooms cleaned. Two loads of laundry. One blog. So much for being prepared for guests.



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Autism: For That Moment

I was sitting on my front porch, book in hand, tea beside me, just enjoying the moment. It isn’t often I am able to do that – enjoy the moment – for I am filled with such high anxiety most of the time. What is going to happen? Who will I lose next? How much will it hurt? But in that moment? Peace. Wonderful, merciful, peace.

It was cool that morning, and I knew it wouldn’t last. Despite how tired I have been, and how sad over the loss of my Gryffindor, I was very thankful that Clara woke me up early enough to enjoy this. The rest of the day would be too hot. Of that, I was certain. Within the hour, we would have to go inside, and close up the windows. But at that moment, we were outside together, and I was reminded of all that was good.

The water was running from the hose. Our sprinkler broke sometime last year, so I have been watering my flowers by hand. I guess they don’t get as much that way, so it is a good thing I planted drought tolerant flowers. When I was done watering them, I put the hose on the trees and bushes, left it there for 5-10 minutes (depending on the plant) and then moved it to the next. It was a Friday. Our watering day. Therefore, it was okay to do this.

In between, I sat on the porch. I drank my tea, and read my book (Assassins – one of the Left Behind books) and watched my dog explore the yard. My son’s 18 year old cat sat on the porch beside me. Though we have been in this house for nearly 13 years, she only started going outside this year. I guess she was enjoying the coolness of the morning, too.

Often when I am out there, I am overwhelmed by how much should be done to clean up our yard and house, and by how different it is from our neighbours yards. Frequently I am struck by how much I don’t belong in this place we have called home for longer than I have lived anywhere else in my life. In that moment, however, I was thankful… content.

I really like how my wildflowers turned out along the fence line. I love how full and healthy the trees and bushes I planted some years ago are looking this summer. I am thankful that China is still with us at 18 years old, and thought how pleased the people we got her from would be if I could tell them (which I can’t, since though they were friends of my father, I haven’t had contact with them since the day we brought her home.) And I was thankful for Clara, who though so terrified in the beginning, has settled well into my life.

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Then it started to get hot, and we went inside. The rest of the day was spent struggling with overwhelming anxiety (with no obvious or new trigger) and exhaustion. But for that moment, I had peace, and I was truly thankful.


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Autism: Enough For Us

It isn’t something I would have asked him for if I could have continued working, but that wasn’t a possibility. And if he was able to work, and I wasn’t, I still wouldn’t feel right asking him for this. However, since both of us have been diagnosed with Autism in the last 14 months, and since I was told that for my mental health I couldn’t/shouldn’t work, and since he was not even able to leave the house or talk to people about getting work, we were encouraged to pursue this direction.

In the beginning, the idea of not working, and not having an income (though I was put on medical EI) was terrifying to me. For the last half of 2015 my focus was on the fact that I had no income… we had no money… what would we do? As is typical of me, the ideas that came to my head were not exactly practical – and would have caused problems in themselves (such as renting out half of my house, and moving into our basement with our son. Neighbours are a problem for me, imagine what renters would be like!)

Then in December I got the notice that I had been approved for Canada Pension Plan Disability. That was really good news, but… it really wasn’t much. Not to say that I am entitled to ‘make’ as much on disability as people make going out to work every day, but work was not an option, and we still needed the money. On disability, I get about half of what I was making at work on an average month, and that in itself was stressful. I couldn’t put it all on my husband, who is working hard as it is (for not exactly high pay) and is turning 64 this year. That wouldn’t be fair.

Still it was something, and if we were really, really careful about what we were spending, the savings in our bank wouldn’t drop too fast. But it wasn’t enough. As I said, work isn’t an option – not at this point anyway – and if I could work, even a little, I would likely lose my disability.

It was quite a difficult position to be in.

The solution was given that since my son was also diagnosed with Autism last February, and since he had no desire to move away from home (he doesn’t even like to leave the house) we would apply for provincial disability for him. Since he was twenty, and considered an independent adult, my husband’s income didn’t count against him for provincial disability. He had no income of his own.


In British Columbia (I don’t know about the rest of the country) provincial disability is a lot better than federal (which is what I am on.) It not only pays very nearly twice as much, but my son is also allowed to make twice as much while on it (if he is able to work, which has not been true to date.)  There are also a lot of benefits that come with this, including dental, prescription drugs, recreation, discount bus passes…

So back in March, he applied, with the help of a Registered Nurse, and his Psychiatrist. And then the wait came, but it wasn’t as difficult, as they gave him some money to use for rent and food in the following months, just not as much as he would get on disability.

Well, three days ago, we got back from camping. He got a letter in the mail, which he opened the following morning, saying that he was approved for provincial disability!!!

This is really good news for all of us, since he had been stressed out about not being able to contribute for his food and such though he was an adult.

Now he pays something towards rent each month, which includes money for internet, Netflix, heat, hydro, etc. He pays for his own food, and clothes, transportation, and anything else he might need. All of this comes to me, which strongly lifts the burden on me, and therefore lifts the burden on my husband.

It may not be a lot, but it is enough – and for that I am very, very thankful.


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Autism: ‘Evil’ Neighbours

“Shut up!” she screamed across the road. I couldn’t believe how angry I became. Not that I said anything in return, but the words sure flowed through my head. So, so angry at her that I went inside and cried for a very long time.

I don’t even know her, really, though she has lived across the street from me for a few years. She yelled at Gryff a few times, too – and that left me angry, but not like this. That was some time ago, and then she got a dog of her own. A beagle. I love the bark of her dog, and sometimes he does it a lot. Sometimes he even barked at us… or at Gryff, rather. And she yelled at him, too.

Really, she yells a lot. So I shouldn’t have taken it personally – but I did. Most nights she screams at her own dog. She lets him out into their front yard, and as he goes hunting after a smell (as Beagles will) she screams and swears at him to come back. I laugh. But not at her. He is just doing what is in him to do. If she didn’t want a dog like that, why did she get a Beagle? And why does she let him out into their unfenced front yard, if she is constantly upset at him for wandering?

She is not only loud in her yelling, but even in talking and laughing. How many times have I been kept awake at night by her? Yelling at her dog (just about every night), visiting with friends, laughing… she is a very loud person. And I don’t like loud. But I have never said anything to her.

It was not even 8pm. Clara and I had just gotten back from our walk, and were sitting in the yard. The neighbour drove home, and pulled a big bag out of her trunk, which she slung over her shoulder. For whatever reason, Clara seems to have even more trouble with people carrying things, than even strangers walking by. So she started barking. She is a Chihuahua after all. She will bark.

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But it isn’t even like I was leaving her to do that. I was calling her back to myself, and pretty quickly she came – but not before the neighbour screamed at her. And I was so full of anger I cried… and cried… and cried.

“I hate neighbours!” I thought, and once again wanted so bad to move. I am not suited to neighbourhoods. At the same time I feel tied to this house by all of the losses I have suffered here over the past nearly thirteen years. Strange, but true. I can’t leave them, I think. Still I wish all the neighbours would disappear – including the ones I like, but especially ones like this.

I can understand her frustration. Same as my son, really. It isn’t like they want it announced to the neighbourhood that they are there. They are not intruders, walking into their own homes. My son is annoyed by her as well, because despite having her for 5 weeks now, she still barks at him nearly every time he comes up the stairs.

But my response is pain. I am surprised with how much it hurts me that other people are upset with my dog. As the thoughts rapidly flow after such situations, however, I start to get an idea of where all this hurt and anger are coming from.

  • I didn’t ask for my dog to die. It isn’t like I chose this! I would have kept him forever, if that were possible – and I long more than I can say to be where he is. I didn’t want to get another dog. I needed to. I miss Gryff. And when they yell at Clara, I am reminded of why I have her, and that hurts!
  • Clara didn’t ask to come here. She was happy with her life, and had a good family. Suddenly she was taken in a car, and dropped off at a strangers home. She was terrified. She didn’t ask for this – yet all she has given me is love. She barks in fear. She barks to protect me. She didn’t ask for neighbours – but here she is. It isn’t fair that they are angry at her for being who she was born to be. It isn’t like they are perfect! And we are working on it. But it angers me that they are angry with her for being herself.
  • Though we didn’t ask for this, I love my dog. She is loyal, and sweet, and loving, and absolutely what I needed after losing my dog. When they are angry with her, however, I am reminded of all that people like her have taken from me over my life, and all I have lost from what was given to help me cope with those losses. It triggers my PTSD so bad that everything hurts.

In moments like this, I am reminded of how much I don’t like people sometimes. “Evil!” I think. And last night, that was my word for her. Today, the word remains. She screamed at the very perfect gift that was given to me in a world of pain, and all I could think was, “evil!”


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Autism: A Week of Wheat

For about two months I was completely off of gluten, though I continued to eat oats as they didn’t seem to have the same effect on me. The plan was to try wheat again before my summer camping trips so that I would know for sure if this was an issue for me.

But then my dog died, and I knew that time wouldn’t make for an accurate test, for the pain was deep, and my functioning was low. Then we got a new dog, and that time, too, wouldn’t reveal the true effects of wheat on my system. I was very anxious, still in a lot of pain, and still not functioning well.

Knowing it was likely a strong issue for me, I tried for weeks to plan gluten free foods I could eat while on my camping trip – but as I said, my functioning was low. I am not even sure I could have done it when I was well. Food has always been a struggle for me to begin with. There are always multiple things standing in my way:

  1. I cannot prepare meals, and struggle to eat at the best of times, when with other people.
  2. Where we go, there is no running water (we bring water) no electricity for cooking (only solar panels for charging devices), just a couple of propane fridges to store everyone’s food (a few years ago, we didn’t even have that. I am thankful), and a barbecue where meals are prepared (often communal, and since I usually can’t eat what others are eating, I have to make my own, which I can’t do with people around, or on propane stoves.)
  3. I am not only gluten free, but am also very allergic to eggs (a staple camping food, which always scares me), intolerant to dairy, allergic to Kraft dinner (another staple, and even the smell leaves me very nauseous) and don’t eat meat, pasta, or mushrooms. Plus, processed foods very often leave me sick immediately after eating them.
  4. When I am hungry, I am strongly prone to meltdown, and can no longer think. The hungrier I am, the less I can tolerate food, and the lower my functioning is. So to leave me to get through that on my own is a bad, bad, idea – yet that seems to be the natural solution for people. “She’ll eat when she is hungry,” they say. No! I need productive help to get through it, and if I am already hungry, I can say that will be hard. Best not to go there in the first place. And no, I cannot help it or avoid it despite my very best attempts at planning.
  5. I make much of my gluten free/vegan foods from scratch at home, when I am alone. But they don’t store well, defrosting (or even expecting to find freezer space) would be very challenging, and it is likely (being communal meals) that I wouldn’t have the space to cook even if I could cook with other people around (which I can’t.)

Eventually I came to the conclusion that I would have to eat both meat and wheat during my nine days away. Even then I have had issues. Here are the results:

  • day 1 – really bad heartburn, with some extra trouble getting to sleep
  • day 2 – increased fears and controlling tendencies towards what other people were doing with food
  • day 3 – complete meltdown, unable to think/function/eat when others chose beans and wieners for lunch; cried for over an hour, massive headaches all day, bad heartburn, trouble sleeping
  • day 4 – continued controlling tendencies, inability to think clearly, anxiety around food, struggles with emotional stability, fuzzy thinking, full meltdown in bed when everything (hair, clothes, skin, blankets…) severely irritated me – my husband left to sleep in a camper, and I had to drug myself to sleep.

All of these things continued and grew worse as I ate more and more gluten (since it was present at nearly every meal, and often the other foods were even worse for me.)

This is not likely something ‘they’ could test for. I don’t believe I have Celiac disease, and if I didn’t have the language to express this, other people would likely not make the connections. Yet it is a very, very real issue for me.

Vacation July 2016 014


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