Consciously Incompetent This Time

Posted on by Astrid

Over the past few weeks, I’ve been attempting several times to create a polymer clay trinket dish, with no luck. The first time, when I’d finally rolled the slab to the right thickness, it was too small for my trinket dish cutter; the second time, I couldn’t even get the clay to the right thickness without it being horribly uneven; and yesterday, when I actually got the slab to the right thickness and size for the cutter, it turned out that the bowl I used for molding my trinket dish into, was too big.

Several years ago, I’d have been content with my second slab and might’ve used it as a coaster if I hadn’t molded it regardless of the size of the bowl.

I am often reminded of the fact that, according to one of my college instructors, people start at unconsciously incompetent at a new skill, ie. overestimating their abilities, then move on to the stage of conscious incompetence, at which point I believe I’m now with some of my polymer clay, like with the trinket dish. It’s an incredibly frustrating stage to be at, because I constantly give up on projects that I want to pursue because of realizing they’re going to be a massive fail.

At least though, I try to remind myself that I’m not as clueless as I was with card making many years ago, because then I’d happily send out cards a five-year-old could’ve made in exchange for cards by semi-professional card makers.

This post was written for the Six Sentence Story blog hop, for which the prompt this week is “card”.

March Memories

Posted on by Astrid

Hi all! Can you believe we’re already halfway through March? I honestly feel that time flies. Today, I want to share some random memories from Marches (is that a word?) gone by.

First, a year ago, I had just recovered from second-degree burns that I sustained in a crisis. Looking back, my life is much better now than it was a year ago, when we were in the midst of a weird idea from the staff that said I had to compensate for every minute I needed support outside of my designated one-on-one hours because of distress. I sort of understand the reasoning, because, at the end of February, I had shared with my behavior specialist and some therapists that, in an ideal world, I’d be able to rely on staff all the time. What I didn’t realize at the time, thanks to all the words about “unsupported time” in my day schedule, is that this is basically already the situation in 24-hour care. Of course, I can’t always expect a staff to show up in no time when I need one, but it isn’t like I’m ever truly supposed to be self-reliant. That’s until that crazy idea about compensating came to be, because, as one of my staff said it, my “unsupported time” was supposedly my structure. Let’s just say I disagree and am so happy that, after a month, the system was abandoned at the end of March again. Now, it’s actually in my day schedule that I can rely on the staff for support when in distress during my times of doing my activities by myself.

Two years ago, I finally had a meeting to discuss my leaving the intensive support home. I’m so very happy I insisted. I remember the intensive support home’s behavior specialist was a bit critical, because, well, I apparently hadn’t left the care facility in Raalte in 2022 completely voluntarily. As it turned out, some staff had been more happy that I’d finally gone than they had admitted. This is somewhat understandable, given that all other clients there had severe to profound intellectual disability and no or minimal challenging behavior.

I can’t believe I’ve been at my current home for eighteen months already. As I share these two snippets, one from 2024 and the other from 2023, I am intensely grateful. I am still struggling at times, but then again I was even at the best of times in Raalte.

Sharing this post with RDP, for which the prompt today is “March”.

Growing Up Emotionally

Posted on by Astrid

Today’s Ragtag Daily Prompt is “when I grow up”. I’m going to be forty next year, so by most standards, I’m considered to have “grown up”. Only by the model that includes life experiences such as working, buying a house, etc., I’m not necessarily truly an adult. After all, though my spouse and I own a house together, buying it was mostly done out of necessity so that I could go into long-term care. I’ve never worked, not even had a side job as a teen.

That being said, in many respects I’m still young at heart. I know everyone my age says so to be cool, but I don’t mean it in a positive way. Rather, I mean it to say that emotionally I’m very vulnerable. Like I shared when discussing emotional development as it relates to intellectual disability (and autism) in 2023, on many subscales of the emotional development assessment used here in the Netherlands, I’m considered an infant or toddler. That doesn’t mean I can’t grow.

When I grow emotionally, I’d like to become more regulated. My psychiatrist used to say that I’d likely experience less emotional dysregulation after age thirty. I’m not sure that’s true in my case. In fact, I’m pretty sure it’s not true. The frequency and severity of my meltdowns has increased, though the duration has lessened significantly. I no longer experience outbursts that last all day. That, I mostly attribute to my staff’s proactive attitude.

I’d also like to be more independent. The problem with this, however, is the fact that my energy level varies significantly from day to day. Because of this, I hardly ever progress in my independence even though I might be able to. The reason is the fact that, if I do something independently once, my staff and others are going to expect me to always be able to do it.

Same for adaptability and emotional regulation: my abilities vary from day to day and sometimes hour to hour. I, for this reason, struggle to really make progress. That doesn’t mean I don’t want to.

Echolalia

Posted on by Astrid

Hi all! I’m officially joining the #JusJoJan fun today, because the prompt inspired me. It’s “echo”.

There’s a resident at my home who repeats everything she hears. I was actually confused when I first got introduced here, because this resident has a very clear, high-pitched sing-song voice reminiscent of staff. When I asked why the staff were saying everything twice, one of them explained that this person wasn’t a staff but a client and she experiences echolalia.

I immediately assumed she’s autistic, but she isn’t. She has Sanfilippo Syndrome, a rare (albeit relatively common in the Netherlands) metabolic disease that leads to cognitive decline. Apparently, this person’s cognitive decline is so advanced that she doesn’t recognize anyone, except for sometimes her parents.

It’s interesting to note that, when I first got here, she always only echoed the staff, not the other residents. Now she regularly echoes me and sometimes other clients too. She still doesn’t repeat it when someone tells her off for talking too much. I think that’s funny.

I, being autistic, sometimes experience echolalia too. When under a lot of stress, I engage in immediate echolalia, like this other client: I repeat what has just been said. Sometimes, I also experience delayed echolalia. When this happens, I notably echo my fellow clients.

When I’m in a mentally good place, I sometimes feel guilty for it, because it feels like I’m appropriating them. That’s not my intention though and, well, I’m not echoing on purpose anyway.

Behind My Anger #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Many people think I’m angry a lot. It was written in my reports from psychologists as early as age 8 and maybe even younger. I do sound angry sometimes, but behind that anger are many other emotions. I mean, I rarely feel genuinely angry, but I express many strong emotions as rage, irritability or other forms of anger.

I don’t blame other people for not seeing it. I see anger a lot when others claim there isn’t any. But it’s hard for me to look beyond (my perceptions of) people’s surface expressions. When it feels as though an angry person stands in front of me, or worse yet, behind me, I shrink inwardly, but react outwardly. This is really hard for others to comprehend, but I have the same feelings as everybody else. So do you, even if it appears I only see anger. We all need to look beyond what seems to be in front of us.

This post was written for Stream of Consciousness Saturday, for which the prompt today is “in front” and/or “behind”. Linda’s also doing #JusJoJan again, which stands for Just Jot It! January. I will write a post when the prompt appeals to me, but I do really hope to be blogging regularly this month (and the rest of 2025).

My 2024 #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “my year”. I don’t usually review my year until December 30 or 31 and, since this post is supposed to be stream-of-consciousness, I cannot do it now either. That being said, I can write down what my year reminds me of.

I am first reminded of the fact that I’ve been tapering my medication since the beginning of the year and am now 10mg down with my antipsychotic and completely off my topiramate. The taper could’ve gone faster had I not landed in crisis just before my first antipsychotic taper and had the behavior specialist not subsequently decided to do the “minute-effing”, by which I would have to compensate for every minute I was in distress during my unsupported time by having less support at my next moment.

The year also reminds me of my continual attempts to get actually reasonably good care, after that system of minute-by-minute compensating was abandoned in late March. I sometimes feel like I could’ve come across like a very hungry caterpillar, but so what? I don’t purposefully experience distress, as the powers-that-be used to think.

I’m also reminded that this is the first full year since 2021 that I didn’t move. Back in 2021, I told my care plan review that I was 95% sure that I wanted to stay in Raalte, but hardly a year after that, I was gone. I resolve for 2025 not to repeat the same mistake.

Overall, 2024 started tough but things have improved ever since. I can’t go into every detail of what I was struggling with in early 2024 and let me just hope and pray that 2025 won’t be the same. That is, improvement is always welcome, of course, but let’s hope and pray that early 2025 won’t bring a setback.

Everything Will Be Okay… #SoCS

Posted on by Astrid

This week’s prompt for Stream of Consciousness Saturday is “wish”. What a timely prompt, as we look back at 2024 and look forward to 2025. I don’t usually have any new year’s resolutions, like I say. Rather, I call them “hopes”. They’re just the same, like I say every year, but calling them hopes rather than resolutions gives me an excuse not to think about them again until the end of the year. Then, if I didn’t make any happen, I could say they were just hopes. Like wishes, they feel a bit devoid of reality sometimes.

I mean, for 2025, most people could wish for world peace. Not gonna happen, baby! In fact, as I read the news recently, I’m more and more scared that even in a country that hasn’t been at war in almost 80 years, we won’t see a full year of peace.

And now I’m scared that by voicing that fear, I’m single-handedly making it happen. That’s my twisted mind playing tricks on me though.

I do wish for there to be many more years in which this country can live in peace. I know that, in a similar way to what I said in my previous paragraph, my constantly saying that “everything will be okay in 2034”, when the “2034” aspect of it was based in a twisted way on the idea that World War III will start then, might be tempting fate. Thankfully, I don’t believe in manifesting in this sense. Besides, don’t many faiths believe in reversal of good and bad? Like, in the Christian tradition, there’s this thing about the first who will be last. Either way, I hope and wish that my twisted words about 2034 will indeed be true and everything will be okay.

No Bad Food #SoCS

Posted on by Astrid

This week’s prompt for Stream Of Consciousness Saturday is “food”. I immediately thought of the title for my post: “No bad food.” This is a phrase used in health-conscious communities to clarify that there’s no such thing as a “forbidden” food when dieting. I had the comment that no food is forbidden written at the bottom of my weight loss food plan in early 2022. That is, the goal wasn’t even weight loss for me, but rather, to have a healthier relationship with food.

This is also what health gurus who use the phrase “no bad food” aim to accomplish: for dieters to be aware of their healthy or less healthy choices rather than rigidly stripping foods off of their “allowed” list.

I’d like to take it a step further and say that the only food you shouldn’t eat is food you’re allergic to or food that’s gone bad. And I mean this absolutely. Yes, some food choices are healthier than others, but when you’re already a restrictive eater and you’re limiting yourself even further because, for example, chocolate spread isn’t “healthy”, you’ll end up with worse problems.

I mean, when originally starting my food plan in 2022, my dietitian gave me a standard weight loss plan because I was significantly overweight. I however wouldn’t eat at least 75% of the food on it, especially the foods she recommended for breakfast and lunch. Thankfully, rather than deciding not to eat at all, which my eating disordered self might’ve done, I negotiated foods I found tolerable and that were still considered somewhat “healthy”.

Now I happen to have the privilege of being at an almost healthy BMI, but the fact that I struggled to maintain a healthy eating routine (or any eating routine, for that matter) when trying to stick to a weight loss diet, did convince me that, truthfully, there’s no such thing as bad food.

Indeed, there’s no such thing as a good or bad eating routine. Yes, some choices are healthier than others, but there’s nothing wrong with making “unhealthy” choices when those are the “healthy” choices given your personal circumstances. Honestly, in fact, I believe there’s no moral wrong in eating whatever you feel like eating. Placing the blame for obesity on the individual, is, in my opinion, ignoring the fact that many people are struggling to stay afloat mentally and physically without having to deal with restricting their food intake.

And I don’t mean that people can’t make healthier food choices, or that they shouldn’t be encouraged to do so within the limits of their own personal circumstances. Like, I eventually settled on low-calorie jelly for on my lunch bread rather than chocolate spread and for regular muesli rather than crunchy muesli for breakfast. These are healthier choices and I am glad I made those. However, if I could not have made those choices for whatever reason, it’d still have been better to eat my crunchy muesli and chocolate spread on bread than to starve.

Moon Phases and Seasons

Posted on by Astrid

I, being blind, haven’t been able to see the moon in at least a quarter of a century and for most of this time, I didn’t pay much attention to its existence. I didn’t have a clue which phase the moon was in until a year or two ago, when Apple introduced moon phases as part of its weather app. Even then, I saw the moon phase as just some random factoid I liked.

That is until a few months ago, my staff told me about a fellow client who is usually very cognitively impaired and withdrawn but lights up significantly during the time around the full moon. I haven’t yet figured out whether moon phases impact me too, but I wouldn’t be surprised if they did. I’m just not as aware of the moon because I can’t see it.

Which brings me to the topic of seasons. Fall here has been incredibly warm and I’m struggling to conceptualize the fact that it’s late October. I can still see whether it’s light or dark outside when I’m actually outside, but I am starting to struggle more with the concept of seasons. I do still know that it’s late October, but I don’t “feel” it, if this makes sense. I don’t know how much of this is my blindness and how much, if anything, is cognitive decline.

I’m sharing this post with Friday Writings, for which the optional prompt is the moon. Yeah, I know it’s Sunday, but who cares?

Clawing My Way Out

Posted on by Astrid

There have been many times when I had to creep out of a very dark, deep pit of despair. I try not to wallow in depression, but, as an Enneagram type Four (and I in no way mean to blame that for all my shortcomings), I struggle to disengage from my feelings and actually live. That is, unless I so completely disconnect from my feelings that I’m in fact pretending they’re nonexistent, something that in turn can lead to my feelings eventually overpowering me and my falling back into the pit. When this happens, I can choose to either stay there or claw my way out and so far, I’ve thankfully always chosen the latter!

I’m thankful that, even though it’s fall and this is usually a season for misery and melancholy for me, I haven’t found myself in the dark valley yet. Let’s hope I can skip it this year!

This post was written for this week’s edition of Six Sentence Stories. The prompt word is “claw”.