Making Clothes — Day 10 — 30 Days of Autism Acceptance

This really isn’t “making clothes” but the starts of it, but here we have some of today’s “goofing off” (ie. not writing stuff on my “30 Days” stuff, which I’m still quite behind with).

4 images of patches on dress

Dress Repair

This is a dress repair I did today.  And I think that this is really where I have been working with a lot of issues with clothing, my need to have clothes that fit, and the combination of my “weird body” has lead me to start to think very seriously about doing my own sewing of my own clothing.

This doesn’t really mean that I am doing all of my clothing now, but I have started to work on it.

Previously I would get my clothes repaired by others.  That was a pretty important thing for me.  I was able to get my clothes repaired.  I felt that I just couldn’t do as good a job as the person I was taking my clothes to (at the far end of the hall), but then I started thinking about how doing that was actually not getting them repaired that quickly, and to start with (darning my socks) wasn’t actually true that I could get a better job done.

So, I have been repairing more and more of my own clothes.

Today as I was putting away my clothes I noticed one was in need of repairs.  So I set it aside to “repair later”.  And in the end, I decided to look at getting it done today if I could, and I did.

Patch on dress.

Full picture of the first patch

This is what the first patch looks like.  The sewing was a bit uneven.  And on the left side I have some of it frayed off because I didn’t properly catch the layers.

You can also see that there is some knots that ended up while I patched it.  Here is a case where I have decided “it is good enough” even though I have a lot of problem that it really isn’t.  I just didn’t feel like trying to go through the whole process again.  And really, it is.

Patch on a dress, detail of the top edge of it.

Detail of the top of the first patch.

This is what the top edge of the patch looks like.  I started the stitching on the right side, and stitched across.

The stitching is uneven, and the two corners (especially the top left one) the stitching is not as I really wanted it to look like.

Patch on dress, along the middle of the patch.

Detail along the middle of the first patch.

Middle of the first patch…  On the left side you can see a lot more of how the edge didn’t get caught properly.  Also, you can see some of the knots that happened as I was stitching it.

Dress with Second Patch on it.

Second Patch on Dress

This is the second patch on the dress.  It worked a lot better than the first patch.  The stitching is a lot more even and along the edge better.  There are a few tiny bits of fraying on the corners.  This didn’t get with knots in it while I was stitching it.

Of course this really isn’t “everything is great,” but the whole point of how these things work is because things can never be perfect, we can better accept imperfections.

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Executive Function — Day 9 — 30 Days of Autism Acceptance

lichen growing on the trunk of a tree

Messy Organization that is Lichen

I’m not really sure where this is going.  Just like all of them.

This morning, I was thinking (don’t really remember when) about how important my understanding of executive function is to my day to day life.

Yesterday I had planned on working, and because I had planned to work, it was difficult when I got to the end of the day and I really didn’t manage to do any work at all.

So, that bothered me.  But then it also was OK, because it was just what happened, and I didn’t just “goof off” or anything silly like that (not that there is anything wrong with that, because sometimes the goofing off is exactly want you need to be doing).

It was that yesterday was a “cleaning day” and despite the fact that for that very reason, I had planned on actually working on other stuff.  Or at least spending some time hanging out and streaming just because that was what I was wanting to do instead.

So what I ended to do with that was getting involved with the cleaning.  There are a few things that happen with the cleaning that mean I usually don’t want to get involved with it.

The most important thing is that most of the things the cleaning lady likes to use to clean, are things which I am sensitive to.  I have been sensitive to them ever since she started cleaning here.  So, it’s not like it’s something new.

Another thing, is that I find that I get hugely overwhelmed socially by her.  This is something which becomes a bit of a problem because it’s really hard to address.  Just hearing her over in some other part of the house is really difficult for me.

Specifically yesterday, she fails to understand just what it is that she is doing, or where she’s going with me that is causing problems for me.  I tried to tell her, but after repeatedly being unwilling to understand that I’m trying to politely to tell her to stop talking to me when I can’t process what she is saying at the level she is expecting me to, I lost my patience, first deciding to just walk of, and then on a second case, to tell her that really my opinion is not all that important.

Now that is why yesterday ended up “failing” for me.  But a lot of those things happen anyway.

Today, I was working with some stuff, and just actually feeling pretty productive with that because when I use the tools that I put in place most of the time it works much better.  I want to do another update on the Medication Log, and the Bullet Journal in general.  Those will be towards the end of this month of events, and maybe “beyond” the end of this month.

I know that I have been working with it, some things are “failing” other things are working fairly well.  Mostly what is failing is some days I am not really managing to look at things as well as I would like to.

So, I think that this long rambling post, is more what this is supposed to be.  It is a bit of a sense of how my mind works when I fail to really give it enough “constraint” to get it nicely on track.

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Magical Creatures — Day 8 — 30 Days of Autism Acceptance

I know that I am writing “Day 8” on April 11th.  This I am trying to be OK with.  It feels a little difficult being OK with it.  But I believe that I’m doing better with that (more in the next post I think, or maybe it’s the one after that?)  Right now I want to talk about the Magical Creatures who live with me.  Yeah, I know, weird language, but that’s OK…  So here they are…

A row of stuffed animals

Magical Creatures, they really just look like stuffed animals

This may end up being a bit weird, or maybe it will be cool, or whatever. I don’t know.

This is a panorama showing the Magical Creatures who live with me.  I think at least some of all of them is visible, but some of them are mostly hiding.  Valiente apparently didn’t really want to have his picture taken, so he’s just about completely hidden.

Magical creatures are very cuddly (most of the time, though I’ve had some times when they’ve told me that they are not wanting cuddles).  When you have 18 like there are in this picture on your bed, you rarely are lacking cuddly guys.

Each one of these has their own name.  Now why is Azure hanging out with the koalas, he was supposed to be with the bears…

So, about these guys?

I know that I have talked a bit about some of the things about them just by happening to mention them.

  • They like to cuddle
  • They talk to me
  • They are very good listeners
  • They are good with dealing with when I’m crying

So, the easy thing is just go through this.

Magical Creatures Like To Cuddle

That seems like it might be obvious.  A lot of people are aware and cuddle with Magical Creatures, or stuffed animals.  A lot of people like cuddling with them.

Though most of those people are “young”.  Oddly there was a period when I got rid of all of my “stuffed animals” because I was “too old for them.”  I do realize that the idea of being too old for them is a really strange idea to me now, but at the time I was desperate to be “not too weird” and sadly that was something that I failed at accomplishing.

Now I realize that trying to “act normal” is less likely to get people to see me as an “OK” person, than if I try to “be myself”.

So these guys like to cuddle.  It isn’t really just that I like to cuddle with them, because I can hear them speak to me, so they will tell me if they want to, or do not want to cuddle.  And sometimes they don’t.  But usually that’s just certain individuals, not all of them.  And a lot of the time when they are saying that they don’t want to cuddle, it is just them teasing me.

Magical Creatures Talk to Me

Now, this is probably the biggest way that I know that these are Magical Creatures not just stuffed animals.  Everyone knows that stuffed animals don’t talk, but these guys talk.  I would say that would be pretty magical in itself, but they also go on adventures, and end up doing some rather silly things (they like to jump out of bed often taking the blankies with them).

Magical Creatures are Good Listeners

Having someone who will listen, and mostly not interrupt (they will interrupt from time to time) is really difficult for me to find and these guys are great listeners.  They don’t just sit there statically and “listen” by not giving any feedback.

As I said, they will talk, and when I need to talk and have a conversation where I need to figure things out they are good at both giving me the space to talk about what I need to, and give good and useful feedback as to what they think about what is going on with me.

They will talk with me most of the time, but they also end up going online and talking with people online.  Most people can’t hear them who have met them.  So I guess either they don’t want to talk to them, or maybe the other people just can’t hear them.  I never really know.

Magical Creatures are Good at Dealing with Crying

Crying is something that happens a lot with me.  I try not to be upset that I am crying, and try to allow myself to cry when I need to cry.  I’m not very good at that.

All of these guys, they are good they don’t mind getting tears in their fur, or scales, or feathers.  It doesn’t bother them.  I think they get some kind of benefit from them, because they usually just let me cry on them as much as I need to.  Never really trying to get me to stop.  Just letting me cry.

So those are Magical Creatures.

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Body Weirdness — Day 7 — 30 Days of Autism Acceptance — 2018 Autism Acceptance Month

Silhouette of a person taking a picture

Autistic Silhouette — Just Me Shooting My Shadow

Today (April 6th) I was having some thoughts about how my “body works” and how a lot of these things that apparently are “very strange” are actually quite common with autistic people.  So I think there are a number of different things that come up with that.

  • Unusual Gait
  • Clothing Annoyances
  • Pain
  • Hypermobility
  • Body Language
  • Changes Day to Day

I think that’s really an interesting list of things that are there, and I don’t really know if there are things to add to that or anything.  This is a lot more than some of the things to deal with, and this may actually end up needing to be multiple posts.  But let’s get started.

Body Weirdness – Autistic Bodies Behave Differently

This has been something that has been working through my mind for a while.  There are a lot of different things that I am seeing are very common amongst autistics which have to do with how bodies work, which I think actually may be very much part of autism, rather than something different that just happens to come along with autism.

This is not to say that people who have these “conditions” which are usually considered physical, or at least expressed physically have autism, but that people who have autism, who also have these “disorders” of the body may actually simply be a manifestation of autism.

Of course, this is just speculation on my parts, because I have not looked to see if anyone has looked at this, and not even at the level of individuals just expressing their thoughts on the topic.  But first, let’s look at these things that have physical manifestations that are common in autistics.

  • Hypermobility Syndromes
  • Fibromyalgia
  • Sensitivity
  • Sensory Overload
  • Sleep Issues
  • Chronic Fatigue
  • Other Pain Related Stuff

That’s really a good list, though probably not anywhere near complete.  So the previous list, is partially mostly things which are so common as to autism as to be considered “autistic traits” while this list is more “co-morbid conditions”.  As you can see there are obvious overlaps.  And maybe some less obvious ones.  So, I guess let’s start tackling the first list.

Unusual Gait

This is probably one of the biggest things that has come to allow me to think that maybe some of these issues are not really issues which are separate from Autism, but are pretty much part and parcel of what autism is.

The unusual gait is “practically” a “diagnostic trait” not that it is specifically listed as a trait, but it does fall under “Stereotyped or repetitive motor movements” I would think.  Though I think in terms of me, there is something more going on here.

If I walk “naturally” for myself I will end up walking in a way which is “unusual” as I have body things which move differently in a natural way than is considered normal.  My left foot tends to rotate outwards, in fact that rotation runs all the way up to my hip (at the very least).

With my “natural” gait being something that is considered probably unusual, with another aspect of it being that it ends up being a bit syncopated.  That is it’s not a constant 1-2 at the same cadence, but that the cadence switches with one step being quicker than the other, and also that I often go through a cycle of 3 or 5 patterns of uneven twos (6 or 10 steps) which will give a different cadence through that.

So, I have a natural gate that is “unusual,” but I also have a tendency for the way I try to walk to “fix” that, as I have discovered that when I don’t work with awareness as to how I am walking, and trying to keep my body “straight” I have a tendency to injure, or increase my pain levels.

Clothing Annoyances

I have a lot of what I want to call “clothing annoyances”.  The stuff that can be really obvious is “annoying labels” and “poor material choices”.  But one that I have no idea how common it is, is “clothes just don’t fit right”.  I also don’t know why this might be the case.

So, the annoying labels thing I think is really common.  When I have bought used clothes relatively often there are labels which have been cut out.  Oddly, I find that more often than not, this is even worse for me than the labels when left in usually is.

I know that might seem really odd.  What I find is that when there is label cut out, what happens is that it produces a sharp edge where the label was.  Now I have removed labels, through removing the label entirely, rather than cutting it.  I don’t do this very often, as it usually isn’t bad enough that I need to.  What will often happen with that is the label starts to come detached, or fray, or something and they become even more annoying.

Only one case recently have I felt the need to remove a label right away.  It was a case where the label ended up irritating the small of my back as that was where it sat, so I did remove it, and to do so I removed the label by pulling the stitching that it was attached with.

What I think is probably less common (difficult to tell really) is sensitivity to the materials that are used.  I have found that certain materials are problematic for me.  Polyester can be really bad for me, it is uncomfortable, and makes me stink.  Which both are really not good.

Other materials I am not really so sure about, recently I have discovered that certain elastics seem to be really bad for me.  I didn’t know this was a problem until I bought several products from one place, and initially I thought that the reversing them, to not have the elastic directly against my skin would help (it does, but it still irritates), and I have found that other products from the same place with elastic which is encased also irritates in the same place.

Of course, I’m not sure what it is about this, because it is very difficult to find out what the elastic is made from.  I have also purchased products of a similar nature from another manufacturer that do not irritate me in the same way.

And something which I feel is “very odd” that it’s such a problem for me (and I’ve heard from a number of different people it’s a problem for them) is that “clothes just don’t fit.”  I keep finding that I will buy clothing and it doesn’t fit as I would hope.

I buy “leggings” which I find never sit where I want.  This feels like this shouldn’t be a problem I’m running into, but for the most point all “pants” I have bought have fallen “too low” for me, and I don’t know about this specific problem.

The other common item I wear is dresses, which I find all have something different wrong.  But a lot have been weird in how they fit in the shoulders.  I think this is possibly because my shoulders are just “weird” compared to what the design is for.

So, the clothes just not fitting feels like a “body weirdness” thing.  All these clothing things apparently are “body weirdness.”  Some of this is “sensitivity” to a lot of different things…

Presence of Pain

Pain seems to be a very common thing amongst autistics.  I’m not sure what more to say this, because a lot of different things come up here, and I probably can come up with a bit of a list:

  • Sensitivity to pain
  • Unusual triggers for pain (loud car driving by can cause pain)
  • Generalized pain (like fibromyalgia)
  • Areas of persistent pain (in cases it is myofascial pain)
  • Frequent injuring of self (possible greater risk, and clumsiness)

That’s another great list, and I’m thinking that maybe I can just dive in here.

Sensitivity to Pain

I have to say that many autistics seem to have a sensitivity to pain.  They have a low pain threshold for whatever reason, and may be in pain on a regular basis.  This actually often leads to a to having a high pain tolerance.

I know that both low pain threshold and high pain tolerance are things that I experience.

Unusual Pain Triggers

I know that for me, when I first discovered some of these things (I have found that a loud car driving by actually can cause me pain) I was somewhat surprised.

I was aware that these things can happen, as I had been involved with a forum where people would talk about it, but I didn’t know whether or not it happened with me or not.  I would speak of some things like “that was so loud it hurt” but I wasn’t really sure if it was something which was literally true or not.  Then I found out that it was.

I have other triggers such as smells and other things.  Though they may be chemical sensitivity.  But the “bright light” thing probably isn’t related to chemical sensitivity.

Generalised Pain

For me, I have pain “everywhere”.  I have been diagnosed with fibromyalgia, and part of that is a “11 of 18 tender points”.  During the diagnosis process the clinician was going through, and by the time she had tested 12 of my tender points, said “I could do more, but you’ve met the criteria” so it was clear at that point that she didn’t want to put me through any more of that.

And honestly, there is something that I was feeling there, it wasn’t that bad for me.  Though it was probably worse for the clinician, as it seemed she really didn’t want to go any further.  I wasn’t surprised, or that it was really that “bad”.  It was certainly clear to me, but it was also “normal” for me.

So, I been diagnosed with fibromyalgia, but it really just explained why I have “pain everywhere”.  I have heard that this is also common, but it’s something that I have experienced.

Areas of Persistent Pain

This is a little different.  I currently have a pain that has been “hanging about” for a good while, in my mid back on the left side.  This is really obvious to me that this is “too much” for me.  It keeps drawing my attention (well, it is almost always in my attention).

Another much more long lasting (but currently far less intense) is my right neck and shoulder.

Some of this pain seems to be classic “myofascial pain” and while I haven’t been diagnosed with “myofascial pain syndrome” or any variation of that, I seem to have it, and in a lot of cases I just don’t care enough (because it usually doesn’t help) to have another diagnosis.

I don’t know how common this is, perhaps because this seems to be something people don’t really know enough about this that people even look…

Frequent Injuring Myself

Some of this I do not really know what is going on, but some is really clear to me.  If I crash into the wall, or the corner of a table or something, I will have bruising happening.

Another issue is I am clumsy, and will often do things like cut myself while I am opening a package or something.

These are things that I know about.  I notice them.  I see the injury, and I know how it happened.

The other thing is I end up with things like a bruise somewhere that I have no idea how it happened.  Or honestly how it  could happen.

So, there we go…  The pain stuff…

Hypermobility

This is something which I have only recently started to look at.  I don’t really know what the deal here is regarding myself.  My leanings are that I may have some degree of hypermobility.

Hypermobility is where joints go “beyond” the range of movement which is considered normal.  It is something like “doublejointedness” which is what I was first introduced to, knowing people who could do things with their body which wasn’t just “higher flexibility” but rather that their joints would allow movement which normally doesn’t exist.

To some extent I think I have this, but I do not really have enough to worry that it is a problem.  Some of this is related to “collagen disorders” in some people, whereas I think there are other reasons.

For me, with things like martial arts, figure skating, gymnastics, I was told about avoiding hyper extending joints and that sort of thing, so I work very hard to avoid that.

The frequency of hypermobility amongst autistics seems to be rather high.  I don’t really know if this is something so common that the could be very much related, or not.

Body Language

This is a tricky thing.  There is some research which talks about “thin slice judgements” which is talking about judgements that particularly allistic (non-autistic) people make in the first few seconds, or even first few fractions of the first second about a person.

This is mostly based on body language, and this research has shown that a lot of people make a judgement about a person, that they have a very hard time “correcting” when presented with more information.

Right now I’m not sure I can say a whole lot more about this, but one thing that I can say, is that these thin slice judgements end up how a person will treat another person.  This means that when this happens and it is a negative judgement the person is negatively treated.

Changes Happening Day To Day

This is just based on personal observations.  I have been wearing the same undergarments (this likely will need to be talked about more fully later) for a little while and have been having a short period between times which I wear the same specific items (I only have 5 items in the “main set” and sometimes can go through 3 in one day (but honestly less frequently than previously as they work better regarding that)).

So, today I was finding that to be fitting “weird” and I couldn’t really tell what was wrong.  Eventually it settled out.  But I think some of that was that my body was just fitting the clothing differently.

So, it’s just a thing I have noticed is that sometimes one day some things seem to happen one way, the next day, it’s totally differently…

Wrapping Up

This is just some of my observations (and some of it has been related to looking at literature about these issues) about how my body, and autistic bodies in general can be “weird”.

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Taking Breaks — Day 6 — 30 Days of Autism Acceptance — 2018 Autism Acceptance Month

espresso in a brown mug, with white inside the mug.

Espresso in a large mug, just taking a break

Yesterday I had hoped to have a post ready for today (again).  So instead I am writing today’s post, well today.  I’d also hoped that I would have tomorrow’s post written yesterday.  So when I was thinking of this today, I realized, that this is actually an “OK thing”.  In thinking that, I really thought that it was a good topic to look at.

So, today, I am writing about how taking breaks is a good thing.  This is a really good thing for me to really consider because I have been wanting to do work on several different days recently when I have just not been able to get the things started with that.

Importance of Taking Breaks

I have a hard time actually “scheduling” my times when I have breaks so I have to say that this is something that ends up getting handled differently by different people.  Some people are really good at scheduling their time, including their breaks in a way that works for them.  Others like myself, I find that I just don’t succeed very well with actually scheduling things, especially scheduling things like breaks.

Yet, I know that I need to be able to take breaks, so I know that I have to be OK with actually taking it.  Yesterday was not a scheduled work day, but because I don’t really schedule my time unless I have some sense of “others need to know” about the fact that I am doing something during a given time.

So I do schedule my “stream schedule” which I have to admit that I haven’t been doing a great job of getting done the way that I would like (ie. my official schedule, and when I manage to stream are not linking up).  I still try to work that schedule.

So “breaks” have been difficult to schedule, and sometimes when I am not really planning a break, I just am not able to do anything other than “take a break”.  Yesterday I had hoped to do some work with my “30 Days of Autism Acceptance” so that the post that would show up today was ready by Midnight.  It didn’t happen.  I kept “trying” but never got to the point of even managing to start the work.

Today I was thinking about how “poorly” yesterday went, and realised just that yesterday actually ended up going really well when I accepted that yesterday was a genuine break day, and that being so was a good thing.

I don’t really think that I have a whole lot more to say on the topic.  So I think this post will just end at this length.  But I need to figure out what I’m using for images for this.

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Bullet Journal — Medication Log — Day 5 — 30 Days of Autism Acceptance — 2018 Autism Acceptance Month

Text and Grid Pattern

Medication Log Version 0.2.0 — This is after a few revisions

I have been working on this for a little while, and at first I was trying it before I was really ready to start this.  I think there are a few things that I want to say about this, but it’s not so much about the design of this (though I’m sure that there will be a bit about that) but more about how this came about, and how I have been working with it.  So I think I’m going to do my “list thing” which I really don’t know how it works for others, but it’s a way I organise things.

  • It doesn’t work if you don’t use it.
  • If you are having trouble using it, this can be OK.
  • Why I created this.
  • Some design issues.

I think that will probably be it, and I think I’m going with this order.

It Doesn’t Work if You Don’t Use It

This was something that I discovered with this as I have been working with the Bullet Journal.  I started using it, a couple of weeks ago, and I really was loving it for a while.  Then I got into a state that I wasn’t using it, and I can’t really say why I fell into it, but I just wasn’t able to get around to actually using the Bullet Journal.

With not using the Bullet Journal, I could not really benefit from it.  I had a bunch of stuff that had got into it, that I wasn’t really being able to focus on while I was not actually picking the physical journal up, looking at it, and getting myself to update it.

So, I realised that I could not benefit from it while I was not using it.

It stayed in my mind, which was a good thing, I still am not sure why it “failed” for me for a while.  And maybe it was just that I needed a break from the intense focus I had been putting on it so I had to take a total break from it, to be able to process that.  I just didn’t “get anything in there done” for those days.

Taking a Break is OK

This is a really great thing to remember.  If you over focus on this, you will have it become “almost obsessive”.  And I think for me that was what happened.  I ended up “burning out” to some extent after I think less than a week of using it, and then took several (maybe even over a week) of it.  I needed to take a bit of a break.

That was an OK thing, and it may well have been a necessary thing.  I am thinking that I had got to a point of over focus with it, and trying to “shift” that, while using it was not likely to work.

Part of why I am thinking that is that since I have started to use it again, I am noticing that I am doing things a good bit different.  It’s not really “clear” in how it is different, but when I look at the 3 days “daily log” since I got back to it, I have 3 days on a single page face.

And Previously, I never had 3 whole days to a page face, though I think I did two complete days on occasion, but several days were more than a page face by itself.

Why I Created the Medication Log

The medication log that I have created is a bit of a “violation” of the Bullet Journal concept.  It’s a violation in the sense that to me, the Journal is more about doing things by hand, than anything vaguely electronic.  So, in a sense this is a violation, but I think the main thing is with Bullet Journal, it is “do what works” and this is a pure example of this.

I was thinking of how I could get this to work, and was having trouble thinking of it working at least with my nice “lined notebook” which didn’t really work.  Trying to create this in the lined notebook just didn’t seem feasible.

Still, I looked at the idea that the fact that if I created a nice version I could print, I also realised that I could create that, print a sheet up (I do a 2 sided sheet, with 2 of these on each side, so a “4-up” version) and only have to put it in where I want it, and have 2 “weeks” over a “new” 4 page spread.

So I convinced myself that this was something I needed to do.

Now the reason I felt I “needed” a medication log probably for me and the “Autism Acceptance” post is maybe a bit more important than why this particular thing was created.

The Need to Log Medications

For me, especially lately, my medications have been rather complicated, as I have been reducing medications (including supplements, and some “over the counter” drugs) for a variety of reasons, and have been having some trouble trying to remember what these changes actually have been so I felt that I needed something to note this.

I had noted this on a computer in a nice word processor document in the past.  This ended up getting a bit “heavy” in terms of managing to keep it up to date, and my “break” has been really rather long with that.

Part of the reasons why I have been moving towards something like the Bullet Journal, is that I find that electronic versions of recording things has been running into the situation that I have lost track and not gotten back to it.

Some of the reasons have been a loss of the original files or things like that, and that has been something really annoying.  Also another issue which I have had with this sort of thing has been that some of the places where I have been trying to do these kinds of things have been “social spaces” and that has resulted in a sense of “social pressure” which actually is very counter productive for me to want to engage with something.

I need to do stuff for myself, and when I realise that I am doing things because I feel some other is expecting it, it becomes more difficult for me.  So the Bullet Journal being something just for myself (at least in this case) has been something which has sort of been working.

So, medications, I needed to track them.  And Bullet Journal, personal, in paper, and I didn’t mention, using my hands.  All important reasons.

Some Notes of Design

I am not quite sure where I am heading with this, as I think I more want to talk about the “process” than about the actual design that we have here.

Initially I wanted to keep the design simple, and not try to get it to work, until I had tried to see what was working and what was not working.

I knew the basic idea of size, and that I wanted to create a 4-up version which I have, but I knew that I didn’t have a good way to update that “once only” due to the fact that I just did not have things that would work that way.

I have used other software than what I’m currently using (Inkscape and Scribus currently) which I could do the whole thing all in one document with hardly any problems.  I found that the workflow with the other software was actually more complicated than I had hoped, as I’d wanted something that would work so that I could just give my clients the “master document” and they could safely edit it, but it failed to work that way.

This isn’t that much different, as I know I have to work on this myself, rather than being able to get clients to update, and this actually is “safer” for me than before.  I would break it myself.

So, I created the single “log” in Inkscape, and did an initial “print test” to see just how well it would work for me.  That resulted in seeing a few different edits that made a lot of sense to me.  So even before I started to use it, I managed to find some things to change with it.

I made those changes, and while I am currently doing 11 days at a time, when I fill my meds (I have a 7 day pill box, and then use 7 tea canisters, and 1 small dish to give 4 more days) this has 14 days of space.  There are a couple of reasons for this that I’ve thought of.

One, I don’t always get my meds filled when I am “supposed” to so I can go a day or more before filling, but this will allow me to record what I end up doing with my meds over those days if it happens.

And second, it allows the addition of “extra recording” that doesn’t fall into a regular day, perhaps for the recording of things that I don’t do regularly or whatever.

So that is why I ended up with this design.  But probably more so, I created the design as it was, and made some edits, which resulted with the format that I created, more I thought of what would “work for me” in terms of grid spacing and size, which gave what I had.

But, I now have the initial 4-up design which is what I am actually using in my Bullet Journal, and with using it as a regular thing, I am finding that I am seeing a variety of different things.

I noticed that I didn’t really have a way to record “changes” as I was doing.  That is taking drugs I take on an “as needed” basis (prn), or if for some reason I end up making a change, or missing meds, or notice something, so I added a “notes” section.

Then the next thing I noticed, is that I like the “schedule” and the “taken” in different columns (this probably needs to have a picture in the future), I was finding I didn’t like the fact that there wasn’t an obvious way to tell them apart, so I looked at that.  Hence the dotted lines.

And with thinking of the dotted lines, I thought it was a good idea to mark the “major breaks” as well.  So that takes us to where we are now, and I need to go print a version of this as it currently is designed, as I need that I think in about 5 days.  So I’ll get it ready for then.

Wrapping Up

That’s probably good.  I have looked at a lot of different things in this post.  I think maybe some people will want to see me look more at some of these ideas.  So, on the Open Psychology Site I am putting a “contact form”, and on Medium, I think you can do some comments or whatever (it is just as weird as the “contact form”) in a lot of ways.

 

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Tea as Self Care — Day 4 — 30 Days of Autism Acceptance — 2018 Autism Acceptance Month

Two tins with matcha in, one darker than the other, and a lid for one canister.

Matcha Powder in tea canisters. A comparison of different qualities of matcha.

This is being written almost 15 hours later than I wanted it to be released.  I apologise for being late with this.  I now realize that why I had not been able to work yesterday was a combination of “recovery from overload” and approaching the “peak” of being sick (which may have started as early as Friday) and may have not passed it yet.  So, I am quite ill right now, so my writing may be off, and I may be making sudden departures (which won’t show up in the writing).

Tea as Self Care — My Experience

I have been meaning to write this for a few weeks I think.  Why it is good self care for me to take tea breaks where I have tea either by myself, or with people (possibly singular) who respect the “quite space” I use tea to create.

First off, the thing that I I note about this is that I use tea as a “quite space”.  This has been how I have tried to experience this ever since I have realised that as a possibility to have tea, and not be around a table of people who are gabbing like mad at each other.

Another aspect, is it can be a “quiet social” thing.

And probably a third, which I haven’t mentioned is “tea quality”.

Tea as a Quite Space

As I grew up tea was an “at meals with the family” thing, and I really took a long time to get into that (I think I was 13 before I started to realise what I like with tea, which was “black” at the time).

The thing with that was that the meals with family always was at least a bit uncomfortable for me, so I never really associated tea as anything other than just something you drank with meals.  This is maybe not common for a lot of people, as it seems people don’t really do this kind of thing as they are growing up.  Or maybe, the people I know who did, have gone away from it, or do it in an enjoyable way.

Probably part of when I realised that this was something which worked differently for me, was when I was staying in a neighbouring town for the “Festival of Arts”.  This was the first time I was spending much time away from people who were family, and it was the first time when I was eating “out” without having other people around me.

I ended up finding a “favourite restaurant” which I had always liked, but really didn’t go to that much, as the family always wanted to do different things.  But I ended up eating several meals in a row at the same restaurant, and that was unusual for me (oh new topic – routine), as I would always be looking for “something different” or it was hoped that it would be what I went for.

So, I found out that being by myself and eating by myself actually was enjoyable, and a very different experience than eating with family.

Eventually I found that I would be quite happy to enjoy tea when I would drink it by myself.  And have also found that experience can be possible with some other people when those people who are sitting in that “quiet” with me.

Quiet Social vs. “Normal” Social

Quiet doesn’t always mean that nothing is said, or that it is genuinely quiet.  Currently, I am listening to a podcast (and streaming my work) so that I can be social, and share my work.  This is a social experience, and an experience of having “signal: as a way to cover up the “noise” of what is going on in the world around me (I actually can’t hear if it is noisy or not at the moment, as the headphones are blocking out much of that).

So quiet isn’t always quiet.  It is about quieting the mind, rather than literal quiet.  It is about getting rid of the noise of the world, or the “annoyance” (which isn’t quite the right word) of having to “deal with” the noise of “noisy people” (who are sometimes non-human).

To me, “social” is more a “mutual acknowledgement of each other’s presence” than something which is explicitly “being social” (speaking with your mouth or whatever) but active “sharing space”.

So, there are ranges from a “non-spoken” sharing where the space is “word free” and maybe even “vocal free”.  Though I know that I am rarely “vocal free” as I vocally stim, and sometimes even verbally stim quite often.  Up to a lot of speaking where that is the focus, which really is very difficult for me.

Sharing space in a way towards the end of “not talking” is really preferable to me, and some people can actually be quite engaging in verbal ways without triggering my “way too much talking” thing though I haven’t got people like that who I can do this with lately, so it’s just me and Tazzy (the dog who owns me) who are able to comfortably spend time together.

Oddly, some people can invade my social space without actually speaking with me.  There is an “invasive social presence” which I experience.  So that is the “normal social space”.

Being in Space with Others who can be Quite Social

Some people who are good to be around can be in the space with me with a sense of social presence without being a social invasion.  This is a very difficult thing for most people to do.  It is really hard for me to be in space with most people without feeling a “social pull” or “social push”.  That is either a sense that I have to “engage socially” or to “get away” from those people.  The really “good” people, allow me to “just be” with a sense that there is some “social connection”.

I can’t really describe what makes that so, though I think the thing is, it can’t really be described in terms of behaviour that can really be “performed” in a real sense.  There is a lot of subtle social, non-verbal clues that I pick up on, which I can’t really describe.

The problem with this, is I end up picking up stuff that people think they aren’t “expressing” but it is very much something they are “feeling”.  And they don’t want others to be able to see it, because they don’t really want to personally acknowledge that.

The Importance of Tea Quality

I am speaking of “tea quality” and for me this seems to be something I can say “this is good quality” but a lot of this runs parallel to my sense of “music genres” in the sense of, “there are two music genres, good music, and music I don’t like.”

Most of that understanding is that I realise that a lot of how people talk about stuff like “music” is “what type of music do you like” and quite often I really can’t explain that.  What I like is stuff I like, and it can range through a lot of different genres, which means that genre as a normal distinction really doesn’t work all that well.

So, for tea, a lot of this is what I like vs. what I don’t like, though it seems in terms of tea, there is a sense that there is a community who looks at tea in a much similar way as I do, though that community is not the “usual people” but the “tea snobs”.  And in a lot of ways I have found that people who can claim a term like “tea snob” or “food snob” or “music snob” often will share a similar sense that I do about that category.

People I know who are real music lovers, and especially people who have some connection with music production seem to have a very similar sense of “good music” vs. “music I don’t like” though for specific cases there may be some disagreement.

So for me, tea drinking for self care really has to be tea which I enjoy, and most of that is tea which is “true tea” and better quality of that.  I will drink other “non-teas” either because they serve a specific purpose (nettles I drink as a way to reduce allergy symptoms) or they are some of the rare “non-teas” which I enjoy just for itself (chrysanthemum).  Currently those are the two non-teas which I can think of that I will drink.

Final thoughts

I just wanted to share this, and how I think that all these things that I do around tea are important to me.  Especially how I look at how “tea” can be in terms of social.  I have been meaning to read Three Cups of Tea mostly because of the different interpretations of that, rather than the main topic of it.  Though the main topic is really interesting to me too.

I think this is one of the different things which I need to acknowledge just how important they are for me, and how I need to create space which allows these things to happen.

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Welcoming Stimming — Day 3 — 30 Days of Autism Acceptance

Green frothy tea in fine hand made bowl

Prepared matcha in a matcha bowl.

This is a really new thing for me.  Well, not totally new, because I have been on a low level working on this.  Once I started to really accept that I am autistic, and start to look more at how I do stim, and what works and what does not work I have been working on this since around the time that I started my assessment (probably since I started to get the idea that I wanted to look at assessment).

Stimming is “self stimulatory behaviour”.  It is behaviour which works to create a level of sensory stimulation which is either unconscious (sometimes this happens with me, and when I am doing it unconsciously, and uncontroallably, I know that things have got “too intense for me” and I need to find a way to deal with that, or I am running towards a shutdown/meltdown, which I really do not like) or conscious (I do some conscious stimming and try to do this on a regular basis, so as to keep my “sensory load” at a manageable level).

The conscious stimming is usually something tactile for me, and sometimes it also involves some degree of auditory stimulation.  The tactile stuff is about stuff I touch (usually with my hands) and often manipulate it.

One of my favourite stims that I have found is the Chinese Medicine Balls or Baoding Balls (保定健身球), which serve two purposes for me, they act as a form of stimming, and they also help with the pain in my hands (likely caused by arthritis).  These actually provide both a tactile stim (the feel of the balls), and an auditory stim (they “jingle” as they move around, and when they “clack” together it is “nice”).

Stimming for me is something that will allow me to reduce the “distractions” that occur with my mind while I am working on other things, which means that I can often use stimming as a way to bring “more attention” to what I am trying to attend to.

I expected that this would be more than this, and maybe I will write more later in the series about stimming, but right now this “feels right” for what I wanted to express.

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I Am Ableism — Day 2 — 30 Days of Autism Acceptance

I am ableism

Mantid on door sill

Mantid quietly hanging out

Welcome to day 2.  I was hoping to have this prepared before now.  The script is from Baeden I think from CAU Winnipeg:

I Am Ableism Script

And to ableism I say:
We are the autistic community.
We will spend every waking hour trying to weaken you.
We reject your pity.
We confront your abuse with logic and common sense.
We have strengths you have failed to acknowledge. We think outside the box. We can gain astonishing amounts of information on obscure topics. Years of flapping has made our arms strong, and years of abuse has made our hearts stronger. And we are not afraid to use these powers to take you down.
We know that we are the true experts on autism, and we are not afraid to tell you.
And if you are offended by our flapping, we will flap even more to defy you.[BMGF2]
We will gather together, share resources, build pride, compare our experiences, and name the ableism we have experienced as such.
We form bonds across differences of gender, race, sexuality, and age.
For every patronizing and pitying video you create, we will make parodies to fight back.

We are coming together in all climates. We call on all faiths. We fight with blog posts and gatherings and rallies and jokes and a growing acceptance that you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: support for our community.
Ableism is naïve. You are alone. We are a community of warriors. We have a voice.
You think that because some of us cannot speak, we don’t have anything to say?
That is ableism’s weakness.
You think that because you have built a wall against me, I am afraid to knock it down with my bare hands?
We work together, because where one of us struggles another will thrive.
We will celebrate our achievements, and the achievements of our autistic comrades around the world.
Ableism, if you are not scared, you should be.
When you came for autism, you forgot: you came for us.
Ableism, are you listening?

About this recording

There was a request for people to record this, and I had hoped to have this recorded by Wednesday last week.  I have also posted it on SoundCloud if any of this isn’t working.

This is one with me reading it 3 times, with the first reading being absolutely cold.  I didn’t even read it to myself.  I tried to get it to work, and I’m not sure if it does, but I am good enough with it.  It kind of has the effect I want, but it is hard to really hear the words actually spoken because of the fact that they are overlapping, and the tempo of each one is slightly different.

I am not sure if there is more I can really say right now.

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Assessment and Diagnosis — Day 1 — 30 Days of Autism Acceptance — 2018 Autism Acceptance Month

Single red flower blooming, with small buds

Single Scarlet Runner Flower, with buds.

Welcome to 30 Days of Autism Acceptance.  This series is the first major series that we are publishing.  I am writing the content throughout the month of Autism Acceptance Month, in April 2018 and perhaps beyond.

Well, actually, I’m starting to write this in March, as I am already having “issues” which I need to find a way to direct into a creative venue with the “upcoming” Autism Acceptance Month (which also coincides with Autism Awareness Month).

This is a post is going through a bit of stuff that I really haven’t been willing to write a longer post about specifically around it being an “acceptance” thing.

So, let’s dive in…

I have gone through an assessment for autism spectrum disorder, which I had hoped to be useful in providing some guidance what would work for me, or what I really is going on for me.

Oddly, I don’t think that is what I got directly from the assessment, as the actual completed assessment didn’t tell me anything new, or anything which I had not already felt was true about me.

But, it gave me a bit of interesting information which I did not really expect to find out.  There was a portion which I really didn’t expect to have too much “new” information for.  That part was the “adaptive functioning” assessment which was done through an assessment called the “Scales of Independent Behavior – Revised” short form sib-r.

This was a part of the assessment that I really did not think I needed as I felt that there would be no real information which I was likely to get out of it, but it was part of it because it would determine if I was “sick enough” to qualify for funding, and that was technically the reason for the assessment.

I fully expected that that portion of the assessment would be a “Well, I didn’t expect it quite that bad, but sure” and would never be anywhere near what was needed to qualify for funding.

I was wrong.  I was totally absolutely wrong.

I expected a “percentile score” somewhere between the 10th and 25th percentile range.  I ended up with a 2nd percentile value for that part of the assessment.  Which means that 98% of “the world” function better than I do in terms of Adaptive Functioning.

This genuinely hit me very hard, and I ended up having to talk with the person who filled the assessment out (it wasn’t something I really had any knowledge of what was being asked, and what the value would be regarding it, though I worked with this person for a few different questions that they wanted to know) as I genuinely did not expect it anywhere in that range.  In fact they didn’t, and have stated that they tried to err on the “high functioning” side of things, knowing it could be upsetting to get an assessment saying it was on the low end of what we both expected, rather than the higher range.

Oddly, even though it still really hurts to think that value is that low, I think it likely is very accurate.  In fact, I believe very much it ended up being the “ideal” value.  It left me quite a bit above what I needed to have in order to receive funding, but made it very clear to me, I need supports very desperately.

So, I was not really able to get any kind of support services, and that was both unfortunate, and wonderful.

Because I couldn’t get any support services I decided that I would work to create them.  In the almost 30 months since I received my assessment (will be 30 months on May 9th) I have been working on creating those services not only for myself, but also for other people who may be in similar situations.

Because of a number of factors, it has not been all that productive in being able to create anything which I can say “yes, this is totally working” but a few things have come together.  Fist off, is this website, it came directly out of the assessment, and how I felt the assessment failed me.

Yes, my “anger” at having an assessment that in a lot of ways was useless to me, allowed me to build a website which I know is helpful to me, because it creates a creative outlet for me.

Further, this is getting streamed, which I think I would have never done.  That really was not something that I would have expected myself to do.

I also through other means found that the stream options which I thought were available to me, were not the only ones.  So I currently am streaming on Picarto, rather than streaming on Twitch where I started to stream.

I have been working for a while setting things up with Picarto, and trying to find ways to make it work.  And today, I honestly have felt that Picarto will work really well for me, even if my stream has been very slow to develop, I did have some conversation on the stream chat which I don’t remember having before.

Most importantly I think that the assessment has been a massive reason some of the amazing (but honestly really scary) stuff I have been dealing with this week has been going on.

On Saturday I attended through Skype a meeting of CAU Vancouver (CAU standing for Canadian Autistics United), despite having been a “member” of the meetup group, pretty much since I received my assessment.  Yes, I’ll admit, I was talking to someone dear to me, who when we are able to “sit down and talk” we can have some pretty amazing conversations, who asked if there was any way that I could do anything online, to which (when it was asked) I said that I really couldn’t, but this came up, and decided to try.

On Sunday I was talking with my family in a restaurant about research, and the fact that most of the research that gets published is “poor quality” and because of that most of those findings can be discounted by people who do not support the findings.

When I was talking about this, the waitress (apparently server confuses the bots, and they think that it’s some sort of computer server) was up front and asked what sort of research I was talking about, and I said that I mostly look at stuff about autism, and she told me that she was an ex ABA therapist.

“EEK, stay calm Jigme, it’s one of those people who clearly are willing to share their awareness of how much they hate you, don’t attack her” my mind went, but my mouth went, “What do you think about it now,” so that I could get my head around what to respond to that, rather than simply speak of how horrible I think ABA is.

It went amazingly well, and honestly, I have to say that the podcast that I am currently listening to, Conversations with People who Hate Me, may well have a massive amount of impact on how I have been able to “be in the world” as it has allowed me to better be able to say, that really even people who express views against me, or against some “group” I belong to, I can always try to talk with them, rather than try to shut them down, or try to convince them that they are wrong.

So, that conversation went really well (stressful for me for sure, but a lot of things are) and honestly I didn’t expect that I was anywhere near that point especially around the topic of ABA.  I was able to have a reasonable conversation with someone “from the other side” though I’m not really sure that it even really was a case of someone from the other side really, just someone who hasn’t really realized that it is not exactly that different, though while I am dead set against ABA, and the goals it works towards, I don’t think that we are that far apart really.

So, just yesterday I got a call from my bank which allowed me to find a way (I hope) to handle the problem that I have been unable to resolve for several months.  I don’t have a clue what happened to allow this to happen, but I do know that it has happened.

And, I have been thinking somewhat, about creating this series.  And I know that this is going to take a while to actually be sure if I manage the “30 Days of Autism Acceptance” but I am hoping, and for the most part expecting that it will actually happen, even if I don’t make it by the end of the month.

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