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Category Archives: Autism: Out in Public

Autism: What Change May Come

It has been a cold, wet spring. I am not sure what to make of it as thoughts of ‘typical’ are replaced with an idea that things are changing and perhaps what once was will no longer be. I must prepare myself to accept what changes may come, for I know that flexibility is not natural for me – yet can be survived, perhaps even well, should I accept ahead of time that “all shall be well.”

All winter, for instance, we had our bird feeders hanging from the maple tree in the front yard, filled with seed – but the birds didn’t come. “Oh well,” I thought, “we can take the remaining seed up to the lake in the summer, and feed the squirrels and chipmunks.”

Then, a little over a week ago, the birds started coming. I have refilled the feeder twice since. True, it was meant to help them survive the winter, and there are many other things they could be eating now, but it sure is nice to watch them at a time when I am able to sit outside (even if I remain undercover, bundled in a sweater.)

It is a change, but I am okay.

There is another change that I am considering for this year. It is not so much the change itself that causes me to hesitate, but the ability (or rather inability) to express it well… the need, that is. The idea – and one vocalized as a suggestion from a friend, and confirmed as a… sensible choice from a relative – is that I not go up to “the lake” this year.

Vacation July 2016 014

The more I consider this, and the more I observe “my girls” growing calm and content in the safety of our yard, the more I come to believe this to be the most logical course for me to take. There are just too many things about that trip which cause me stress and anxiety:

  • food issues which have always lead to meltdown and humility there
  • eagles, osprey and other wildlife that actively seek to eat my girls
  • where I will sleep (tents are no longer suitable as I fear for safety for my girls)
  • how to stop my girls from barking and chasing neighbours, family, and their dogs
  • cows – yes, cows! Clara will chase them, which also becomes a danger, and they are free range up there
  • how to safely contain my girls when I go swimming, kayaking, or playing games with others up there
  • a more than 2 hour drive each way to get there in a vehicle without air conditioning (again, safety and food issues, and there is the motion sickness on top of that)

As I consider all of these things, and my anxiety grows, I return to the comment from my friend. “Wouldn’t it be better to stay home?”

Is it better to stay home? Pretty much always!

And the truth is, I live in a beautiful tourist town where my pastor frequently reminds us, “people save all year to come to a place like this.” And he is right!

My house is a short walk from the lake, and two beautiful nature trails. I live maybe a five minute drive from a really nice beach. I have a fully fenced yard, with many shade trees and bushes, a lawn swing and a freestanding hammock, lots of wildlife (though easier to keep my girls safe) right here in my own home.

My girls are happy here, and I am able to relax, so… why would I want to leave?

 

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Autism: Maybe I Heard Wrong

I suppose part of the issue comes for the fact that I don’t hear well in groups. Not at all. I try to hear what is being said. I try to pay attention. But if there is any sound at all other than the one person talking – say, quiet music in the background, or a couple of conversations going on at the same time, or… any sound – I miss most of what is being said.

The situation happened like this: there were a group of us sitting around in a circle. The question was, “how was your week?” and it was my husbands turn to answer.

Now another issue with paying attention to what is being said is that I am not at all an auditory learner. I am not even an auditory thinker (if that is a thing.) I think in pictures. So when people talk, I spend much of my time trying to convert their words into the pictures that I can understand, and then match it up with prior experiences so that I can remember what is being said.

It doesn’t always work.

It doesn’t often work.

In this particular moment, as I was trying to convert the words of my husband, other people were adding comments as well – and suddenly one of those comments was directed at me!

I didn’t even catch all the words, only something about me not counting on the insurance… and they all laughed.

Was it a joke?

Was it something they believed, which was hidden in a joke?

Since I didn’t hear what was said, I didn’t respond, and they moved on. They did, but I couldn’t. In my head I was going over the few words I heard, mixed in with the subject my husband had been talking about (his trip to the doctor) and I was once more hurt and defensive by the words that might have only been meant as a joke.

Only I never understand these types of jokes (if that is what it was – if not, it is even worse.)

It is like when my son was a baby, and his paternal grandmother bought a t-shirt saying something like, “baby for sale.” She thought it was cute and funny, but I was absolutely horrified.

“I would never!” I thought, and kept the pain and tears hidden inside with extreme effort.

Do they think I am with him for the insurance?

Maybe they do. Not them specifically, but many people have believed many bad things about me before that weren’t true. It hurts even more that I can’t defend myself, and when I try, they become even more sure of their original belief.

I am not with him for the insurance – yet if something happened to him, I would struggle a lot in so many ways (that they would likely never understand) and would depend on it, so they would likely believe it more, and it is so not true. But I can’t explain it. I haven’t the words.

Again, this isn’t about the people I was with in that room – but about a lifetime of past experience with things others have wrongly believed about me (and caused extensive damage in believing.)

So maybe it was a joke, and maybe I did hear it wrong – but it still hurt. And those jokes? No matter how hard I try, I am incapable of understanding them.

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Autism: Freedom For Now

We had this vehicle that was sitting in our driveway for many months, not being used. It wasn’t our vehicle, but we had agreed to store it for family.  Since no one was using it, my husband asked if it would be okay for us to get it insured during the time that my mom was here – and the owners agreed.

Suddenly I have a vehicle – not that one, for it is a standard. I can drive standard, but… I am anxious enough driving an automatic. With the standard, there is so much more to think about, and so many more issues that could arise.

For example (and I guess this is the worst one) when I have to stop on a hill in the standard, I am painfully aware of how close other vehicles stop behind. When the light changes, and it is time to go, I not only have to think about the lights and the traffic in front of me – but there is the brake, and the clutch, and the gas, and the gears, and… the vehicle that will roll backwards before it moves forward.

It is all too much – like city driving (which I don’t do – at least not in or near the city I learned to drive in.)

So my husband will take the standard car to work, and I will have the use of our automatic van during my visit with my mom.

Only he didn’t just get insurance for the 2 months while my mom is here, but for six months!

It feels really strange.

I haven’t had free access to a vehicle for a long time. In fact, in our first 9 or 10 years of marriage (even after I got a job outside of my home, and with different shifts from my husband) we only had the one vehicle.

When I was going to school, and had to travel to and from the job site frequently (we were building a house) my husband decided it was best to get a second vehicle for convenience. But when I stopped working, well… there really wasn’t enough reason to justify the expense of a second vehicle, so the extra went to the wrecker (we only ever buy well used vehicles) and we were back down to one.

It made sense. It did make sense.

If I needed to get anywhere, I would have to drive down to work with my husband, and pick him up at the end of the day, in addition to doing my own thing. Sometimes I did, but… driving into town and back once causes me severe anxiety (just being in town without driving causes me strong anxiety.) By the time I got home, I was nearly always crashing – and going out again was really a very difficult thing for me. So I didn’t do it often, and have spent most of these years at home.

Then I qualified for door to door bus service – only I had a bad experience with that, and was afraid to try again.

Instead I have been home. I like to be home, but with no accessible way to leave home, I have felt trapped and isolated.

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And now, suddenly, I have a vehicle again. I drove into town today to pick up a few things for my mom’s visit – and town was busy! I don’t know why it was so busy on a regular Monday not altogether close to tourist season, but it was.

I arrived home worn out and exhausted, and very anxious about having to go out again to pick my husband up at the end of the day… but then, I don’t have to, do I?

It feels strange, but I am grateful for the sudden freedom that having a second vehicle allows. Perhaps not worth the expense long term, but it is really nice for now.

 

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Autism: Recognizing Myself

Every year for several years at Easter, my church has taken family pictures. “It is the one time of the year everyone is likely to dress up,” my pastor says. It is sort of a tradition, I suppose.

One year – the last one my son came to church with us (his friend moved away, and he felt awkward, and wanted to be invisible, and… stopped coming) I wore a blue, sleeveless spring dress with a black lace like shirt under it. I thought it was nice – until the picture came back. I don’t know what I was thinking. I am not very good at fashion, I suppose. I have never understood it.

So the next year I tried to choose more neutral clothes. The pictures came back, and I was happy with the result.

Easter 2015

 

The following year I chose similar clothes, but the previous winter I had gained all that weight from the anti-depressants I had tried (30lbs in 12 weeks – I had never weighed so much in my life!) I stopped taking the medications, and tried to exercise and watch my diet, but I never was able to lose that weight.

Easter 2016

I hated that the picture reflected that weight gain, but it was still a nice picture.

Though it has been 1.5 years since I went off that medication, I haven’t been able to lose a pound. Not one! That in spite of a lot of focus on trying to lose that weight.

I haven’t lost any weight, but I haven’t gained any, either. So it really surprised me how much heavier I looked in this year’s picture. Like the one where my clothes were weird, this is a picture I would be ashamed to show.

Easter2017

Truly, I don’t have any real opinion on weight for other people. In fact, like clothes, I hardly notice at all. I either recognize a person because they look like they’ve always looked to me, or I struggle to recognize them (like when my son lost a huge amount of weight, and shaved his head after having long curly hair most of his life.) because they don’t.

At the same time, if people look at all different – such as famous actors playing different parts – it is extremely difficult for me to know them. Johnny Depp, for instance, always looks like either Captain Jack Sparrow, or Willie Wonka to me. Those are two very distinct characters, yet I can recognize both. Yet he plays a character that comes in at the end of Fantastic Beasts and Where To Find Them, and while I know it is Johnny Depp playing the part, I can’t see it. I can’t.

So I think, my frustration with this weight gain isn’t about the weight at all. My struggle is that when I look at myself, it doesn’t look like me. When I try the clothes it took me 30+ years to decide were right for me, they don’t fit the same (they don’t fit at all), and when I try to find similar clothes in a larger size, they don’t look like me, either.

I am frustrated about being tried on a medication that made me gain such an extreme amount of weight. I had never weighed so much before in my entire life. I am frustrated that the doctors, and the people who decide the medication is okay to distribute, decided that what I looked like was less important than my mental state – I feel they need to treat the whole person, not make one thing worse to (possibly) make another thing better.

Yet it isn’t so much the pounds I gained, but that in that, I lost myself. After nearly 40 years, I was finally able to look at my picture, or look at myself in the mirror, and think, “that is me.” Before that, whenever I looked, I would think, “Is that really me?” It is sad to be back to that place.

 

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Autism: Please Don`t Criticize

Aside from the couple of days it rained each week, I have spent most of the past two weeks out in the garden… Well, not exactly most, but for me, something I focus on for 2-3 hours each day is most. That is about as long as I can be active, when my energy is high, without burning out.

The sun has been shining, and my girls have thoroughly enjoyed every minute spent out there. They are even learning to bark less – which is huge! Now, instead of barking from the moment they sense someone coming along the road, until they are out of sight in the other direction, for the most part they are only barking a couple of times at each end of our yard.

Of course, they still chase them from one end to the other (often doing circles and figure eights since they are so much faster than the people waling) but they are quiet for the most part. I am really pleased with their progress since just a couple of weeks ago I was so worried about what the neighbours would think of them, I was considering blocking off the entire stucco wire fence with landscape fabric (probably not the best idea, but the cheapest I could – or I should say, my husband could – come up with.)

A couple of different people who walked by, and saw me in the garden, asked me if I was planting seeds already. From their words I learned that it was too early to be planting in our climate, and I was thankful that was not in fact what I was doing.

Last year, along a section of our fence line, I placed a layer of newspapers and cardboard. On top of this, I put a shallow layer of top soil (it used a lot of bags for just a small amount) and planted wildflowers. Despite how shallow the soil was, the wildflowers grew. They were really pretty. I suppose I could have left that to see how many would regrow this year (from the sprouts that came up this spring, I would assume a lot.)

Vacation July 2016 004

That was not the plan, though. Whether I decided to re-seed it with wildflowers, or try to grow something else there, the plan was to go deeper (since the grass would have been mostly killed after being covered so long.) So I have been digging, and pulling weeds, and vines (which seem to be attached to the grass, but are a real issue in the soil) and taking out insects (though struggling with an inability to kill them even though I am pretty sure they are the type that would be bad for the garden) and tossing the many worms back in (with rubber work gloves, of course.)

And that is what I was doing both times the people came by and asked if I was planting seeds already!

I am really glad that isn’t what I was doing. “No. I am just pulling out the weeds and grass,” I told them, and they were satisfied with the answer. Had I been planting seeds, however (as a few say to plant in early April) I would have been so embarrassed by their question that I would have struggled to return to the garden for the rest of the year – and I would have had another meltdown after full of the thought of how much I hate having neighbours.

Maybe it would have been a mistake to plant this early. From their words, I guess it would have been. But it would have been my mistake – and I need to be allowed to make them; on my own, and without comment from other people. I can learn from my mistakes. In fact, I learn best from my mistakes – only all I learn from my mistakes when others comment on me is that I am a failure.

I know I am supposed to be able to learn from criticism. I know it. But I am filled with such shame from the words of others – and for good reason, for I have had way more than my fair share – that all it does is shuts me down, and makes me afraid to try again.

So I am really thankful that what I was doing was something they approved of – for I really have been enjoying my time out there, and would hate to have that taken away.

 

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Autism: Detailed Uninteresting Conversations

One afternoon as I was working outside in my garden (both an enjoyable experience, and an uncomfortable one, since my garden is in the front of my house, near the street) some neighbours were walking by. They had their dog with them – a small Chihuahua – and my girls were racing her along the fence line; they love to do that!

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Though I have discouraged it before (my girls become defensive, and might nip) they brought their dog up to the fence, to see if they might be okay to visit this time. They were not! I really wish people would stop coming right up to the fence. Sure my girls are cute, and it is fun to watch them running the length of the yard (likely to ensure no one comes in,) but they are not good visitors – and it seems they likely will not get over this, though I really try to discourage the behaviour.

Well, they did move their dog away (I wish my girls would visit with her – Gryff, my Pomeranian, loved to visit with her) and the husband asked me if we were having trouble with our vehicles.

At the time, we had two vehicles in our driveway – our 18 year old van, and an uninsured vehicle belonging to my SIL. Both had their hoods up, as my husband was charging the batteries.

“Is (your husband) having trouble with his vehicles,” the man asked. I tried to explain – “the car has been sitting idle all winter, and the van… well, the lights flash as if they are possessed.”

But my explanation wasn’t enough for him, and he kept trying to pull details out of me:

  • do they flash all the time?
  • Which lights flash?
  • If the headlights are turned off, do they still flash?
  • If the lights in the cab are switched off, do they still flash?

On and on he went, and as he spoke – though I realize in his own way he was trying to help – I became increasingly agitated.

A lot of that had to do with him trying to pull from me, and to share so many details verbally. I have a lot of trouble following conversations to begin with. Though I try to listen, my brain can’t seem to hold on to so much detail, and it becomes exhausting when I am forced to try. I am very much a visual person, and much more capable of following what is being ‘said’ if the words are written down. (Pictures are even better.)

Above that, this was not something I was interested in. The lights flashing? That has been an issue for at least 6 years. We have taken it to the mechanic, and I even asked my auto teacher when I was in the trades program at college. No one has given us an answer – and really, since it is my husband who looks after the vehicles, I have no desire to start worrying about that. (I have enough anxiety.)

Part of it was that he was trying to show his knowledge. People seem to do that. But again, I don’t care! It is a vehicle, and I have absolutely no interest in vehicles (unless they are undetectable, self-driving, flying cars that run off solar power, air, or water.) I won’t remember a thing he said (mainly because it was spoken, and not something I saw) and it felt like he was trying to make me feel stupid as he asked so many detailed questions about – again – something I don’t care about enough to pay much attention.

It flashes. That is enough.

So once more, an enjoyable afternoon spent in my garden turned difficult because… people! I wish we had bought a house with the large, sunny yard in the back.

 

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