Breaking Point #WotW

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again, as well as participating in the Word of the Week linky. I’ve been struggling intensely over the past few weeks and am wondering how much longer it’ll take before I reach breaking point. Or whether there is such a thing as a single breaking point, honestly. I mean, I’ve been comparing the build-up to my being quite likely burned out to the horrific experiment (I tell the animal-loving part of myself it’s just a thought experiment, but I doubt it is) of the lobster in hot water. You know, the idea that if you throw a lobster into boiling water, it’ll jump right out, but if you gradually boil it, it won’t notice until it’s too late and then it’ll die. Realizing this actually happens makes my inner vegan sick! But I digress…

First, I’d like to talk about the weather. It’s been mild with daytime temps between 14°C and 18°C, but the nights have been a lot colder. We had a little rain early in the week, but none over the past few days and there’s none in the forecast for the upcoming week either.

Then, let me share how things have been going. I’m increasingly overloaded and have had quite a few incidents of crying uncontrolably over the past week. I’ve also been engaging in some compulsive self-imjurious behaviors, particularly at night. I’ve almost literally needed the night shift each night over the past few weeks. Each evening, I’m telling myself I won’t need them tonight and feeling guilty when I do. Most night staff are still understanding and kind, but it’s only a matter of time before they, like the regular staff, will grow weary.

Unfortunately, my support coordinator and assigned staff aren’t on the same page. The rest of the team are all over the place. Most are struggling intensely with feelings of powerlessness. Some admit that they wish they knew how to help me, while others act out their feelings by screaming in my face that if I go on like this, no-one will be there for me anymore. The first group, I feel some level of compassion for even if I don’t know how to show it. The second, I only feel scared of. I’m currently actually terrified for the times the staff who screams about there being nobody for me anymore the loudest will be supporting me. This is the same staff who shoved the “one chance” rule down my throat a few months back, but she’s also the same staff with whom I used to do quite many fun activities. She’s not a bad person or a lazy staffer, but she’s most definitely overworked.

I see it’s a vicious cycle: I’m distressed, exhibit more challenging behavior, which frustrates the staff, who then act out in more repressive ways, causing me even more distress… and unfortunately it’s the staff who show the least harmful repression to me who see the most of my obvious distress. I’m extremely scared of where this will end. My worst fear is the harsh staff being seen as more effective and their actions therefore being reinforced. I’ve heard of more than one current client at this institution being “bullied” (staff’s words) into compliance and I know even the Center for Consultation and Expertise is all for ABA (applied behavior analysis), including in many cases aversives.

I do try to see some glimmers each day. I however sometimes feel guilty when I can’t appreciate them or end up spiraling over some apparently tiny detail when I did enjoy some meaningful activities that day. I constantly hear the staff’s (same staff who screams that soon there’ll be nobody) words that I have nothing to complain about because I get familiar staff and enough one-on-one ringing in my ears. I try to remember my support is better already than it was at the intensive support home, but that only contributes to more guilt over my inability to be upbeat.

Recently, after a few incidents in which I’ve become physically aggressive, I’ve been thinking I should be forcibly medicated or even euthanized. My inner animal lover sometimes contributes to this. If aggressive dogs are put down, shouldn’t I? My wife, who is a vegan, countered that just because aggressive dogs are currently put down, doesn’t mean that’s the way it should be.

Unmasking…

Posted on by Astrid

Hi everyone. I’ve been struggling intensely for a while now. The aggressive meltdown that caused me to land with my head on the floor (as I mentioned in the comments on that post, I wasn’t actually thrown) was only the proverbial straw that broke the camel’s back. I’ve been having chronic headaches and nausea that the doctor says aren’t due to the fall. Last Wednesday, I had a fever just when the doctor took my temp, so she concluded I must have the flu or something. I doubt it, as I didn’t have a fever any other time my temp was taken and I’m not having any other flu symptoms. I’m more sensitive to stimuli, mostly sounds and scents, than I used to be. Unfortunately, my ability to argue hasn’t gone, so the staff believe I’m “oppressing” them when I refuse them access to my room when wearing strong perfumes. This morning, my support coordinator told me to stop pacing my room, saying it’s compulsive and that compulsive behavior only worsens over time. She may be right about that, but it’s not like I’m doing anyone any harm by pacing and it’s not like the staff deal with the reason for my being more compulsive. I’m pretty sure I’m in significant burnout and the obvious solution to my staff seems to be to repress my behaviors that indicate I’m in distress.

I’m trying to read up and listen to podcasts on autistic self-discovery and unmasking. Not that I have the attention span to read for longer than about fifteen minutes at a time. Or that I think any of the recommendations I find, are useful to me, simply because I have an institution and rather behaviorist staff to deal with. I’m also unsure where to draw the line between valid unmasking and infringing upon other people’s rights. For example, apparently I’m not allowed to ask staff to wear less perfume because that’s “oppressive” and I don’t know where it’ll end when I keep “choosing” to be by myself rather than accepting staff who are essentially presenting in a willfully overloading manner.

Joy and the Fear It Induces #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m once again late writing my post in the #AtoZChallenge. Today is another hard day. Last week when talking to my support coordinator, I realized one of the problems might be the fact that I think I don’t deserve to be happy. This is not necessarily all there is to my trauma-related symptoms and, besides, is it still paranoia if they are actually out to get you?

I’ve mentioned the fear of joy before. It has been following me forever, since learning that I was losing the little sight I had at around age seven. I always prepared for the day when I’d go totally blind. That day still technically hasn’t come, although I can hardly call the tiny bit of light perception I do have sight.

Then there is Jolanda Venema. Dutch people who are in their fifties or older will no doubt remember her photo in a newspaper in 1988. She was chained to a bed, stripped naked, in an institution for people with intellectual disability. I learned a few years ago that it was actually the institution I live in now. I am not old enough to have actually seen the original newspaper article, but I did learn about a similar case in a child and adolescent psychiatric unit in Utrecht in around 1997. This particular girl, a 16-year-old at the time whose name I forgot, was even more like me than Jolanda, in that she had a borderline normal IQ. Cases like these have always haunted me, but that got worse when I entered the care system in 2005 and more so when I was admitted to the psychiatric hospital in 2007. At the time, staff literally told me that, when I needed more support than the three nurses to sixteen acutely ill patients (if they weren’t understaffed) could provide, I’d be locked up in seclusion. And I was. And coerced into taking high doses of medication to prevent me being secluded tons of times after that.

I know for a fact that I’m not allowed to be truly happy. The adage in care is, after all, that it’s better to provide okay’ish care to two people than excellent care to one. And I would’ve agreed if care ever had been excellent. But it never was in the 20+ years I’ve been in the system and not in the 20+ years before that. At least not for people like me and Jolanda.

This doesn’t mean I never experience moments of joy and I do try to acknowledge them. I’m not purposefully being more negative in order to elicit better care. If anything, the opposite is true. However, as another incident this evening proved, most people don’t nearly try their hardest and they don’t think others do either. Well guess what? I do! That doesn’t mean joyful moments don’t induce fear, but fear is not a choice. Besides, like I said, is it still paranoia if they are actually out to get you? I don’t think so.

Institutional Abuse: Abuse in the Care System #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter I post in the #AtoZChallenge. Today I want to talk about trauma that I for one didn’t experience in childhood: trauma and particularly abuse experienced in the care system. I’m struggling majorly with this, as just this evening I had an aggressive meltdown that led to me being thrown to the ground by one staff and another staff admitting that the only reason I’m not being locked up or physically restrained is the fact that I’m not strong enough.

I want to say here that my choice of words is a bit tricky. Is it “abuse” if the client was themself aggressive, even if it was “just” verbally? I am struggling intensely with the fact that, on the one hand, my wife never locked me into a room or threw me to the ground even though I was quite a nasty person to her at times when we were living together, but on the other, there are just two staff to ten clients here. I try to understand that staff are people too and not necessarily worse people than others are. My wife sometimes said that the staff at the intensive support home were ill-intentioned at best, but I doubt it. My point is, people are part of a system. When that system is purposefully created to oppress some people, yes, the “low-key” oppressors are to blame too, but that doesn’t make them personally bad people. Many unfortunately don’t realize how much they’re accustomed to using (and abusing) their power. In fact, where it comes to care staff, most don’t even have a clue that they’re higher up in the pecking order than us clients are.

That doesn’t mean that the (ab)use of power doesn’t affect us. I mean, I was once, at the intensive support home, told that if I were dragged to my room, I had probably asked for it with my behavior. The thing is, even if I had, that doesn’t make being physically dragged not traumatic. Similarly, I can totally understand why the staff this evening threw me to the ground (I’m not even 100% sure he intended on me landing on my head), but that doesn’t mean my head doesn’t hurt.

One last thing I want to discuss, is the fact that institutional abuse may technically be a staff’s action (or inaction), but it is the result of a long line of decisions made by management, the Care Office or other funding agency and ultimately the government. It is not the client “choosing” to be restrained/locked up/drugged/etc. with their behavior and, like I said, the staff are the ones doing it, but if the government chooses a lock or shot is cheaper than support, they are the ones ultimately responsible.

Three Wishes, Revisited

Posted on by Astrid

Hi all. Last Tuesday, I saw the Writer’s Workshop prompts for this week. Several of them spoke to me but I somehow didn’t give myself the time to actually write on them. Today, I’m finally back on the blog and I’m choosing the prompt in which you’re granted three wishes. I did a post on this topic already in 2020. Let’s see how things have changed over the years. What would I wish for now?

1. Unlimited door-to-door transportation. I listed ParaTransit access as a wish in 2020, but now that I’m actually using it for things other than getting to my wife, I realize that it’s not that having unlimited kilometers would solve my problems getting to places. I’d also need the driver to actually drop me off at the place I want to go to. Transportation, after all, is one of the reasons I don’t go to cerebral palsy meetings as often as I’d like, because they’re often organized at restaurants, which taxis can’t reach.

2. My ideal room/apartment within a care facility. In 2020, I wanted to be closer to my wife, but if I have my transportation desires covered anyway, that’s no longer a necessity. My ideal place wouldn’t be much larger than my current room, but it would have a private bathroom and its own kitchen, in which I could prepare my own food with assistance. It would also not be as close to communal areas as my current room is, because well one of my main problems right now is overload from all the sounds coming from the living room.

Looking back, I can’t believe I didn’t list more care hours as a wish in 2020, being that I didn’t have my one-on-one at the time. I do now and of course I wish for it to stay the same.

3. Improved physical and mental health. Don’t we all wish for optimal health? I listed it in 2020 too, as my first wish in fact. Since then, my physical health has improved in some ways and declined in others. For example, I’ve lost significant amounts of weight that I indeed needed to lose and as a result, no longer have high blood pressure. I can also walk for longer. On the other hand, my tremors have gotten significantly worse and I believe my cognitive functioning has declined a bit too.

My mental health, I think, is better than it was in early 2020. I hope it improves more though.

Now that I compare my wishes to the ones I listed in 2020, I see an interesting trend, in that despite better quality of life, my wishes are still largely the same. No, that’s not entirely true: they’re bolder, in fact. I wonder what this means.

Meaningful Activities #WotW

Posted on by Astrid

Hi all! No Weekend Coffee Share (at least, Natalie isn’t hosting) this week again. I love Anne’s Word of the Week linky for summarizing my week too. Maybe when Natalie hosts her coffee share again, I’ll do a combination of the two. That is, if I can figure out a word or phrase to sum up my week. This week’s phrase is “meaningful activities”.

This week was truly a good one overall. I’ll start with my spontaneous baking activity on Saturday. My staff and I had gone on a walk, but we didn’t want to stare at the wall for the rest of my long activity time slot, so she proposed we do a baking activity. I proposed to make caramel blondies, for which I’d bought the ingredients a few weeks ago already to use with another staff, who however wouldn’t say when we could make them. The blondies were extremely filling but good. Next time, I’m going to cut down on sugar a bit and add some white chocolate on top. I served the blondies to my fellow residents in the evening. One of them asked for days after that, when she learned that I had some left over, for more “Astrid cookies”.


On Monday, my staff and I went to the institution townhouse for coffee. We didn’t have our wallets with us, so we couldn’t buy any of the treats they offered (the coffee is free). However, one of the people behind the counter offered us a brownie that wasn’t good enough to be sold to share. My staff had only a small piece and I had most of it. It was delicious! I had planned to eat the last of the blondies that day, but had two and besides, I was completely stuffed already. I decided to offer them to the two fellow residents who aren’t at the day center during the day either.

On Tuesday, the same staff was supporting me in the afternoon again and, of course, we reasoned we had to go back to the townhouse with our wallets to buy something this time. We didn’t fancy another brownie, but we did have a look at some of the handmade items on sale. My staff bought some tea and I bought a bag of rocky road chocolates. No photo in the townhouse, but I did take an interesting photo of the bag on my nightstand.

Then on Wednesday, like I shared that day already, I crafted a polymer clay dice for a staff who was leaving. Today, I also have been claying, because one of the staff who’s been here forever but with whom I’ve never done a clay project, wanted to learn. It felt good being able to do this activity even though it was in the morning and I was a little cranky.

On Thursday, the staff and I rode the side-by-side bike to Twello to buy some things. I bought raisins, pumpkin seeds, sunflower seeds and corn waffles. We also needed a new mixing bowl, since I’d found out earlier that the one we used to have had a large tear in it. The staff offered to pay for it with the home’s debit card, which sounded reasonable, since it was the home’s bowl that tore. Not that I have a mixing bowl, but well.

Yesterday saw another trip to Twello to go to the market. When we were at the townhouse on Tuesday, one of the institution managers was telling us that he’s going to campaign for the upcoming local election at the market on Friday. I didn’t see him at the market, but I did get to talk to two other parties’ campaigners, both of who gave me some seeds to plant. I’m having to think on where to plant them, as my little yard has no flowerbeds.

Overall, this week was truly filled with meaningful activities. Since my new day schedule will (hopefully) take effect on April 1 and I’ll then be having two weekly cooking or baking activities, I’ve been looking at things to make then too. My wife inspired me to look into vegetarian dinners. Not that I’m a vegetarian or ever plan to be, given that meal delivery service meals suck even more without the meat than they do when it’s included. However, when I prepare the meals myself, I’d love to look at ways of adding flavor without meat or poultry. The idea is that usually I won’t have to cook for the entire home, so I can experiment without considering my fellow residents’ preferences.

Don’t Get Me Started… #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “Don’t get me started”. Oh my, don’t get me started… or I’ll rant forever.

I have this habit of ranting about my care to whoever will listen. Not even about my current care, but about my care at the intensive support home. This afternoon, I was telling a staff who’s just quit smoking that, now that institution grounds are officially a non-smoking area, I no longer permit staff cigarette breaks during my activities.

I say that grounds are “officially” a non-smoking area because, in reality, no-one listens and even the higher-ups smoke on grounds.

I am a non-smoker and yet I understand the fact that clients want to smoke in the yard. Who are the higher-ups, whether they abide by the rules or not, to prohibit smoking in our own home? Well, outside of it, of course, because yes the non-smokers have a right to a smoke-free home.

Staff, however, are usually the ones who smoke the most and I don’t fully understand that. I mean, yes, it’s an addiction, but it’s also a habit. And, besides it being just plain yuck, staff are taking extra breaks in order to meet their “needs”.

Back to my not permitting staff to take cigarette breaks anymore. Every staff here understands, even the hardcore smokers, but back at the intensive support home, not so. I told this staff about a staff doing my morning activity time slot. At the start of it, she said that it’s long, right? It’s ninety minutes. “Can I have a cigarette?” I told her to stand on my balcony and discard her cig safely. Half an hour later, I was doing a clay project. “You’re now busy with the clay anyway. Can I smoke again?” I reluctantly let her use my balcony again. Half an hour later still, an hour into my activity, she was like “I’m going to need to discuss something with a coworker”. And off she was. When she came back ten minutes later, I told her I didn’t like her essentially taking three breaks during a ninety-minute support moment. “But you don’t have one-on-one,” she ranted, saying that with my “just having extra care” this means she could leave me alone whenever she needed to. And besides, she didn’t need to offer up an explanation to the client for her decisions. Well guess what? Yes, staff do need to justify their decisions to me when these affect my care.

And don’t get me started on the difference or lack thereof between one-on-one and extra care. They’re both just sums of money the institution receives for a client. Yes, some clients have more one-on-one hours or extra care hours or whatever than I do, some even having 24-hour one-on-one. However, these sums of money are based on average amounts of care a client needs. If a client has 24/7 one-on-one (which none of the clients at that home had), it means they on average need one staff with them all the time, but sometimes two and sometimes briefly none. I at the time had seven hours of extra care/one-on-one support a day and my support coordinator claimed that my day schedule at the time spanned nine hours. There are various reasons why firstly this wasn’t true and secondly it doesn’t mean I had two hours of support that wasn’t being paid for, but don’t get me started on that…

#WeekendCoffeeShare (January 3, 2026)

Posted on by Astrid

Hi everyone. It’s nearly 9:30PM as I start typing my #WeekendCoffeeShare post, so no more coffee for me. I just had a cup of orange-flavored green tea. Feel free to grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s cold, windy and snowy thanks to weather phenomenon Anna in Scandinavia. I can deal with the cold, but the wind and snow are rather annoying.

If we were having coffee, then I’d share that I haven’t really been moving much lately. I signed up for the free trial of Apple Fitness+ a few weeks ago, but canceled it on Thursday because it kept getting in my way when I tried to change my workout type on my Apple Watch. Not that I’ve done much other than walking, but I did try to dance once and somehow my watch kept messing up.

If we were having coffee, next I’d say that I’ve been struggling quite badly over the past few days. My day schedule is still a never-ending battle, I still haven’t heard from the Center for Consultation and Expertise consultant and on top of that the behavior specialist responsible for my home will be going on maternity leave soon. Yesterday, I also found out that I won’t be getting a new assigned staff now that my assigned staff is going to be my support coordinator. It wouldn’t have been a problem, had she had enough time in her work week to be both support coordinator for ten clients and my assigned staff, but she doesn’t. Staff keep saying I can go to any staff with my concerns, but this is actually not going to work for me with everyone having different opinions and no-one ever taking responsibility for so-called team decisions.

I had a meltdown over this whole thing yesterday. Staff kept arguing with me that I am too needy of my assigned staff and I have the capacity to understand the staffing situation so I don’t need an assigned staff. That last comment was made when I said the other clients often cling to their assigned staff people too. I’m honestly fed up with all the claims that I’m fundamentally different from every other client.

If we were having coffee, I would share that I quit Morning Pages already. I started on January 1, but last night hardly slept at all, so I decided I was lying down after breakfast again. Besides, the app I used won’t let me browse entries with VoiceOver, so I can never read what I wrote. Not that you’re supposed to for a while when you’re truly doing The Artist’s Way, but eventually I wish I could check back.

If we were having coffee, I’d finally share something positive: I’ve been crafting again this past week. On Tuesday, I made yet another polymer clay cheer up frog and, on Thursday, I made a unicorn with seed beads for its eyes. The frog, I once again made in record time: just over twenty minutes. And it’s awesome.

Yesterday, I was talking to my assigned staff / support coordinator about possibly making the unicorns and cheer up frogs to be sold at the care agency gift shop in the next town. The reason I went into it wasn’t altogether positive, namely the fact that another resident now has to pay for support to accompany him to his football and I’m scared that, eventually, the higher-ups will decide polymer clay isn’t “work” so I’ll have to pay for one-on-one support with that too. However, I do like the idea.

The War on Time #3TC

Posted on by Astrid

Hi everyone on this cold Boxing Day. When I saw today’s #3TC prompt, I was reminded of a newspaper article my father shared with me in late 1999. It was called something like “The war on time” and was about all the ways people have fought over timekeeping and calendars over the centuries. It included, of course, the change from the Julian to Gegrorian calendar in 1582. I gathered from that article that our calendar’s still not fully aligned with the sun, so that it’s proposed that the year 4000 won’t be a leap year.

By the way, can you believe we’re closer to that year now than we are to the year Jesus was born? Interestingly, in that same article I read that Jesus wasn’t born in the year 0 (which I’m pretty sure no-one had a number for back then) or 1. He was probably born at least five or six years before then and most certainly not on Christmas day. It makes some sense to celebrate his birth around the end of the year though, but that would be closer to March rather than January. Then again, back in the day the months of January and February didn’t exist.

I used to love learning all about timekeeping and calendars. I could probably find a lot more info about it now, over 25 years later and with my having access to the Internet. But I can’t be bothered, honestly. I’d rather be writing random ramblings.

Now going to turn off my little electric heater. The heating in the care home broke down on Wednesday. I noticed I was freezing, but didn’t connect the dots, since it was supposed to be -5°C outside too. I spent the holidays with my wife and came back around 5PM this evening to a home that was still cold. The staff figured out the problem yesterday and it got fixed, but with the type of heating we have, it takes forever for the entire home to warm up, hence why I put on the heater.

#WeekendCoffeeShare (December 13, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I’m starting this post at 5:35PM as my iPhone is upgrading to iOS 26. I’ll probably finish this post after my evening coffee at 7PM. By the look of it, the iPhone update might not even have been completed by then, as my Internet is incredibly slow. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Early in the week, the daytime highs were like 14°C and we had a little rain. No more rain today or yesterday and the temps have dropped to 10°C. That’s still warm for this time of year.

If we were having coffee, then I’d share that I’m still going strong meeting my movement goals on my Apple Watch and it’s now finally decided to actually add days to my streak. I broke my streak record a few days ago. The previous record was 309 days and it was set in June of 2023. However, of course I cheated with this one, as I paused my rings while sick last September.

If we were having coffee, then I’d tell you this week is a mixed bag. Early in the week, I found out that, as of next month, all self-employed temp workers will be let go. That’s understandable, as a self-employed person actually doing the same things as regular employees, is considered tax evasion on the part of the employer (in this case the care agency). The Tax Service had originally planned on handing out fines for this starting this year, but due to the problems in care and other sectors, it postponed this a year. I had known that this was going to happen for years, but due to the care agency’s careless attitude, hadn’t been sure that the care agency was actually going to follow through this time.

On Monday, one of the regular staff here, who is responsible for planning, said it’s indeed true and that this will likely lead to more staffing issues and possible cuts to our care. Other staff have been reassuring that my one-on-one hours have already been approved until late 2026 and I need not worry about cuts to my one-on-one. All this makes me quite worried regardless, as I’m just now learning to actually fill my one-on-one with enjoyable or meaningful activities.

If we were having coffee, then I’d talk about these meaningful activities. On Monday, I finished the Christmas decorations I crafted last week. No photo of the individual pieces, sorry, as my staff hung them on the branch that we use to decorate for the seasons before I remembered to snap a picture. I do, however, have a few pictures of the entire scene.


As a side note, my staff also borrowed some of my clay cutters for creating more decorations. These, I believe she is now finishing and will be putting up soon.

If we were having coffee, next I’d tell you that, yesterday, I visited the next town’s market again. I love going to this market, which is quiet enough that I don’t get overloaded yet there are enough stalls to buy all of the things I’d like to buy. I had fried shrimp at the fish stand. Well, one of two fish stands, actually. It turned out I usually go to the other one and like that one better, but I was with a staff who’d never been to this market. I also bought olives, mixed nuts and candy.

If we were having coffee, lastly I’d share that I finally got my mother-in-law’s access to my records at the care agency revoked. I had originally asked that she’d be given access because, for some stupid reason, the powers-that-be wouldn’t give me access. Their reasoning was that it’d lead to too much distress, something I now realize isn’t grounds enough for denying a patient access to their own records. However, due to this decision, for many years, nobody had access to my records, so the staff could basically write down whatever they liked. That’s why eventually I asked my mother-in-law be given access. Not that she ever reads my records or that I trust her to respond appropriately if she does. Now nobody has access again, but I’m soon going to persuade the behavior specialist and manager to give me access after all.