#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.

#WeekendCoffeeShare (December 6, 2025)

Posted on by Astrid

Hi everyone. Yesterday, I had tons of ideas on my mind on what to blog about but no motivation to actually write. Today, it’s the opposite. I’m joining in with #WeekendCoffeeShare even though I think I don’t have a lot to share today. I, as usual, had my last cup of coffee for the day about half an hour ago and am going to take a break from writing this post to have my soft drink and chips. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. For most of the week, it was chilly but not rainy with daytime temps around 7°C. Today, the daytime high was 10°C but it’s been raining all day.

If we were having coffee, I’d tell you that I was pretty active for most of the week, both by walking and one time by cycling to the next town just to have a purpose for cycling. I didn’t need any groceries and we only ended up having a snack, but at least we weren’t aimlessly cycling around.

Today though, I spent the entire day indoors and still need to dance or whatever to reach my movement goal on my Apple Watch. My streak for whatever reason is still stuck on 33 days even though I’m moving each day and it’s been stuck on 33 days for a month or so.

If we were having coffee, then I’d tell you that I had many plans over the past week but haven’t accomplished a lot. On Monday and Tuesday, I did create some Christmas decorations out of polymer clay. Yesterday, I attempted to bake cookies. They turned out okay but not great and the process was frustrating. Nonetheless, it was better than lying in bed or staring into space, which is what I’ve been doing a lot lately.

If we were having coffee, I’d cheat a little with the coffee share being about the past week, since there was none last week. I’d share about the meeting I had with the behavior specialist early last week. It went well. First of all, like I said, the “one chance” rule about orienting new staff got ditched. My assigned staff, who is in training to become my side of the home’s support coordinator now too, E-mailed me the new orienting plan yesterday and it looks pretty good.

We also discussed my day schedule. In the future, I’ll hopefully get more set activities. In preparation for this, my assigned staff created instruction cards for some of my activities, so that I can hopefully do more activities regardless of which staff is assigned to me. She E-mailed these to me too and I gave some feedback.

If we were having coffee, lastly I’d share that I’ve been having lots of memories lately. And by “memories” I don’t mean good ones. Yesterday, for example, I remembered the team meeting for my current home I attended in the summer of 2023. One of the staff, when I told them that I can’t prepare my own lunch, replied: “But you lived independently, right?”. I immediately got defensive, because yes, I technically lived independently, but I shouldn’t have. Yesterday when I was talking about this with my wife, whom I’d first met when living on my own in 2007, she told me more about how bad it actually was. Until a few years ago, I believed that, while I couldn’t cope, this was mostly a mental thing. In other words, I was falling apart mentally but could really care for myself if I hadn’t been so scared. Well, no.

It is sad to realize that part of the reason why I need so much care is lack of training in childhood, adolescence and to a lesser degree early adulthood. I’m still struggling with my parents’ reasoning that they couldn’t have taught me because I was too strong-willed and just didn’t want to learn. It may’ve been true that I didn’t understand why I had to learn something that caused me frustration, but then isn’t it the parents’ job to guide the child through their frustration? I’m honestly still struggling with this.

I Don’t Owe Anyone a Grateful Heart

Posted on by Astrid

Hi all. Today’s prompt for Reena’s Xploration Challenge is quite fitting. Reena asks us to ponder the paradox of gratitude and resistance.

Sometimes, by being grateful, we can bring about change. I am reminded of a story in one of the Chicken Soup for the Soul books in which nurses on one floor were irritated with another floor’s nurses for their constant negativity. Instead of fueling the conflict by becoming negative themselves, the nurses wrote a lengthy gratitude letter to their colleagues. I am not sure whether this was exactly what the story was about, but this was at least the message I took from it. The fact that the one group of nurses focused on the positive rather than giving in to the other group’s toxicity, turned the situation around for the better.

At other times though, particularly when there’s a power difference between two people or groups of people, gratitude becomes passive resignation. In this case, while it can be helpful in the short term to the oppressed person to keep a positive outlook, if the oppressor takes gratitude as acceptance, in the long run nothing will change.

I will give an example from my own life. Regular readers of my blog know that I’ve been accused of having a negative attitude by many people in positions of power, such as my care staff and treatment providers in various care settings. An example is being told I ought to be happy that anybody wants to work here at all. Well, no. While it’d be easier for me in the short term if I could just accept the umpteenth random stranger for my one-on-one care, in the long run it’d mean I’d always get assigned the random temp worker because regular staff would rather support the others and chill out with other regular staff while they can. Besides, even if it’d cost me less effort to resign than it costs me to rebel, I don’t owe my staff a positive attitude. If there’s anyone for whose sake I should have a grateful attitude, it’s myself.

It doesn’t mean I don’t struggle with this whole idea. I feel intense guilt whenever a staff throws some variation of “be happy anyone wants to work here” at me. I am also constantly reminded in my head of my assigned staff at the intensive support home, who was disappointed in me for never having a perfect day even when they’d followed my day schedule completely and had always assigned me regular staff. Which, for the record, never happened.

I, for clarity’s sake, don’t think violent resistance is the answer. When I have a meltdown over some rule I disagree with, being aggressive will always end in me being restrained. However, there’s a whole world between aggression and passivity. And sometimes, unfortunately, the people in positions of power are so caught up in their reality of being the ones to decide, that they (either willfully or not) ignore my less obvious attempts at resistance.

For example, last week I was trying to resist the “one chance” rule about orienting new staff. I tried going along with what the staff wanted, but this only led to further abuses of the rule. I tried talking sense into the staff, but this didn’t work either. Finally, on Saturday, I had the most massive meltdown. I am not proud of my behavior at all. In fact, I really wish I could’ve solved the issue without being aggressive, if for no other reason, then because the staff are far stronger than me and I ended up being restrained. In the end, I thankfully finally got a meeting with the behavior specialist on Monday and the rule got ditched. Now all I can hope for is that my main message, that I have to consent to every individual rule or agreement affecting me unless the behavior specialist uses the Care and Force Act, got through to everyone.

#WeekendCoffeeShare (November 15, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again today. I’ve just had my last cup of coffee for the day. We didn’t have large biscuits that we are usually allowed to have on weekends, so I had a mini Mars candy bar. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. During most of the week, we’ve had unusually mild temperatures for November. We had some rain too, but not a huge amount. Today, the daytime temperature didn’t get above 9°C, which I consider cold but is actually normal for this time of year. According to my wife, the weather forecast predicted 27mm of rain today. We did get rain indeed, but not nearly that amount.

If we were having coffee, then I’d share that I did meet my movement goal on my Apple Watch each day this week. However, I’m pretty sure my 90-day average will soon be lower than my 365-day average, as I just barely met my goal most of these days and it’s been this way for a month or so already. My movement streak is somehow still stuck on 33 days.

If we were having coffee, then I’d update you all on my struggle re orienting new staff. The new staff, last week when being properly introduced to me finally, said this would be the actual (re)start of her orienting. Not so. She did get one more chance to be oriented to my morning routine, but not another to the activity time slot. I feel this was unfair, as during her original orientation to the activity, we only went for a walk because I, not having properly been introduced to her, didn’t feel like being vulnerable with her with a more difficult activity, such as polymer clay.

On Tuesday, this staff was assigned to me for my morning routine, but this one was different than the one she’d been oriented to. She asked me a ton of questions even though I’d told her during our introductions not to do this. Then, on Thursday, she got assigned to me for my activity. I was pretty angry about this, but several staff including the new one herself claimed she’d had her chance to be oriented and I just had to deal with it. I feel this is the world turned upside down, giving me responsibility for the success or lack thereof of her orientation. One staff went so far as to tell me that because I have one-on-one, staff need less orienting to me. In all honesty, I think the opposite is true, because when you’re supporting the group, you can always fall back onto a coworker. This same staff also said, when I said that they don’t expect my fellow residents to explain their routines to new staff, that I’m very different from the other clients and have a totally different diagnosis so not to compare myself. That triggered me to no end, because not only do I get told this nonsense in intellectual disability services, but also in psychiatric settings. And what I mean by nonsense is the assumption that I, because of my diagnosis, can deal with whatever the staff throw at me and just choose not to, while other people can’t help their behavior. I mean, of course I have an at least average IQ, but I am not in the care system for the fun of it.

Thankfully, it looks like my support coordinator is not in full agreement with the one chance rule at least when it applies to regular staff. Too bad the damage has already been done with this particular staff.

If we were having coffee, then I’d share that, on Wednesday, it was my wife’s birthday. I took a ParaTransit taxi to our house and we had lunch together, then chilled out and got pizza takeout. I gave my wife a handmade necklace with a skull pendant.

If we were having coffee, lastly I’d tell you that we had a dance party at the home yesterday. This time, I was too stressed to play DJ myself, but I did suggest a few songs to the staff.

“One Chance!” Still Haunts Me…

Posted on by Astrid

Today, I’m feeling like writing but am uninspired, so I’ve been checking out a ton of writing prompts and the like. I’ve been fiddling with various notetaking apps too so that I can finally write snippets without them needing to be finished right away. I know I could do WordPress drafts, but I for whatever reason don’t like that. I’m now trying out Google Keep.

One of the writing prompt series was Halloween-themed and the question was about my most recent nightmare. I can’t remember and, thankfully, I rarely get vivid nightmares anymore. I do get snippets of conversations that replay in my dreams. “One chance!” yells the staff trying to force me to accept her new colleague. Those two words haunt me. I have had this experience before.

I recently learned that PTSD nightmares do not necessarily involve the details of your trauma. I don’t know whether the Redditor who said this, based this idea on the DSM, as I’m fairly certain that in the criteria for PTSD, nightmares do need to be trauma-specific except in young children. However, even just reading that someone else experienced vivid dreams that aren’t necessarily connected directly to their trauma, feels validating.

When I was living on my own, I experienced extremely vivid dreams almost nightly and, even when those dreams weren’t directly connected to my trauma, they were disturbing nonetheless.

In a somewhat similar fashion, the staff’s comment haunting me, in itself, might sound rather innoceous. I mean, I know that it doesn’t necessarily take physical or sexual abuse for someone to be traumatized (again, contrary to what the DSM says), but if this comment were a one-off experience rather than a symptom of the rather traumatizing power dynamics involved in institutional care settings, it wouldn’t have stuck with me. Or it might have, but it wouldn’t have had the negative connotation it has now.

There’s a reason secondary triggers are a thing. I often feel shame about the numbers of triggers I have. Usually though, when the context isn’t in itself distressing, I’m able to point out that something is a trigger for me and move on.

Not with this one, but then again it was actually a boundary that was crossed. If this had happened with three people who aren’t professionally related, it’d have been considered a form of harassment. I still struggle with this concept: that what is considered “normal” in a care setting, would be considered a violation anywhere else.

Quality of Care

Posted on by Astrid

Hi everyone. Today, I filled out a survey by the Dutch disabled people’s lobby group Ieder(in) on the quality of my care and its impact on my quality of life. I filled out the same questionnaire in 2023, a month or so before moving to my current home. Back then, I rated my quality of care 2 out of 10 and ticked almost every box on incidents I’d been involved in (as a target).

Today, I could think of only one incident box to tick: incidents due to lack of oversight, such as elopement. I mean, I myself have been aggressive towards staff, but that’s not what was meant. I also rated my quality of care 5 out of 10. That’s still not good enough, but it’s a lot better than it was back at the intensive support home. As my wife jokingly said, maybe in two years I’ll rate it 8 out of 10.

That’s not even entirely impossible, because as I explained in the field for additional comments, the bureaucratic framework for better care exists. By this I mean that I have a budget for one-on-one care that’s sufficient and that on most days, the home isn’t too short-staffed to provide me most of the care I need. What still makes me judge my quality of care as insufficient, is the fact that the way my care is organized in practice, doesn’t work for me.

There was a question about whether you have familiar staff or not. Back in 2023, I think I answered that I almost always had unfamiliar staff. Now I can’t remember which box I checked, but I did put into the comment boxes that the team including so-called regular temp workers is so large and new staff are oriented so chaotically that I essentially deal with a lot of near-strangers.

Speaking of which, my support coordinator thankfully agreed to another chance at orienting the new staff I mentioned on Saturday. Today, she attended my evening activity and we just chatted in order to get to know one another. I still feel some discomfort around letting her be oriented to my morning routine tomorrow, but agreed to it anyway. The fact that the staff even gave me a choice, shows improvement.

I must say I’m less willing to accept awful care now than I was two years ago. After all, let’s face it, almost no-one in the outside world accepts a random stranger into their house who refuses to leave and demands to do personal care tasks for them. I was forced to do exactly that until a year ago (and on Thursday, but thankfully my support coordinator changed that). In that sense, I wish there were a question on the survey asking me how my care compares to two years ago. I mean, in early 2023 I wrote a pretty cynical post about a day with optimal care. I reread it just now, thinking I’d claimed my care was actually optimal back then. I fully intended to contrast my revised idea of what constitutes “optimal care” now with my screwed view back then. Thankfully, my perception wasn’t as screwed in 2023 as I thought it was. In fact, I said pretty much the exact same thing I said on the questionnaire today: the framework is okay, but the practical reality isn’t. I do feel my reality is better though than it was then.

Care Needs

Posted on by Astrid

Last year, when I was first feeling like I was falling apart at my current care home, I wrote a list of my “needs” and E-mailed it to my assigned staff and support coordinator. I heavily watered down my wishes, thinking a need isn’t the same as a want and whatever comes out of a discussion of my needs, should be working for everybody involved, not just me. For example, I asked for more clarity on what activities I’d be doing each day and offered to use my whiteboard, but also said staff could just ask me what I thought I’d be doing and help me find a suitable activity; this last one was then put into my day schedule, ie. “Staff upon leaving asks Astrid what she’s going to do next”. Needless to say, this didn’t work for me, being autistic, at all, as it leaves the same amount of unstructured chaos as the old wording, which was simply that I had “alone time”, did.

Now, more than a year later and with the Center for Consultation and Expertise involved to help me and my staff improve my quality of life, I’ve written another list, but this time, it doesn’t offer solutions for my unmet needs; rather, it’s simply a list of problems I encounter at this home. In a way, I feel that being solution-focused should be more constructive, but then again this time I have the consultant to think up possible solutions to come closer to meeting my needs.

This post was written for the Six Sentence Story linky, for which the prompt this week is “need”.

September 2025 In My Kitchen

Posted on by Astrid

Hi everyone. It’s the last day of the month and I’m joining in with the In My Kitchen linky once again. Last month, I said I had a few plans for the first week of September and hoped the rest of the month would be active as far as cooking and baking went too. Well, it wasn’t really, but in addition to there still not being any clarity on when I can actually do a cooking/baking activity, it didn’t help that I was sick with probable COVID for most of the second half of the month. Anyway, let me share what I did accomplish.

First, on September 2, I cooked a pasta dish for this side of the home. I used roasted bell peppers, mushrooms, onions, garlic and chicken. I bought the roasted bell peppers in a pot, but later found out it’s relatively doable to make them yourself.

Then, later in the week, I made another bowl of overnight oats for myself. In the picture, you can see my special spoon. I usually don’t take pictures of my adaptive cutlery or other special tools, but actually why not?

Too bad I don’t think of creating simple breakfasts or lunches for myself more often, as I really wish I could contribute to my wellbeing that way. However, I also blame the day schedule, because I have “alone time” for thirty minutes before lunchtime and I cannot prepare food completely without help.

The next Saturday, September 6, I used my two-hour activity time slot in the afternoon to bake Biscoff blondies. My baking tray was a little larger than the recipe creator recommended, but the blondies turned out great regardless. Most of my fellow residents and staff had one with their evening coffee.


They were delicious but very filling. When, the next day, my spouse and I had two of them, neither of us cared for lunch even though I am usually almost insatiable.

The next week, I didn’t do anything in the kitchen. On the 18th, however, I celebrated two years at this care home, so I wanted to cook dinner again. That day, there was also the institution festival, so I decided to do the cooking on Wednesday the 17th. I made burgers for the entire home, both sides, so 20 residents plus staff.

Unfortunately, the home was short-staffed that day, so I initially offered to eat in the living room as to not need a one-on-one staff in my room. By this time, my respiratory symptoms were getting noticeable and I was easily overloaded. I managed to snap a picture of my plate when in the living room, but quickly decided to go back to my room.

Once in my room, I discovered the staff who I’d asked to do the final work, had forgotten to add the onions, bell peppers and mayo to my burgers. Thankfully, this got sorted and I took another picture of my burgers before consuming them.

The burgers, unfortunately, weren’t as good as I’d planned them to be. I mean, they couldn’t have been all that great, as they were freezer burgers, but I had totally wanted the dish to be more appealing.

Overall, the first half of the month was pretty fulfilling in the kitchen department, but the second half wasn’t. I’m hoping that, now that I’m almost over this respiratory bug, I can start preparing food again. Today, I did get a breakfast box full of yummy things in it to be used on Saturday, when I do the Walk on Sunshine for the Dutch cerebral palsy charity.

The Could-Be COVID Chronicles, September 2025 Edition

Posted on by Astrid

Hi everyone. It’s been over a week since I last wrote a post for my blog. I’ve had some ideas on my mind, but I’ve been battling what I believe could be COVID since Wednesday. Here in the Netherlands, all official precautions and regulations were ended in early 2023 and replaced with a recommendation to “use common sense”. Now my institution has always been rather careless when it comes to quarantining people suspected of having COVID and I myself am not the most sensible either when there are no rules.

On Wednesday, in fact, I was cooking burgers for the entire home when this whole thing started. I blame myself for several other clients and half the staff being sick now, but the staff say they would probably have caught it somewhere anyway, just like I probably caught it from a staff coming to work sick on Monday last week.

On Thursday, I was in bed all day, but I felt better on Friday, so I decided to go for several walks and a dance. Not a good idea if I indeed do have COVID, as not resting well enough can contribute to having long-term symptoms.

Saturday, I was in bed again for most of the day but dancing at 11PM in my room again in order to meet my movement goal on my Apple Watch. I then decided I really had to rest, so lowered my movement goal for that day and paused my rings altogether on Sunday until tomorrow.

I’m now feeling okay, but not nearly back to normal. Tomorrow, the Center for Consultation and Expertise consultant is coming. There are no longer any rules prohibiting them to visit me and several other staff are working while having symptoms now too. Besides, I didn’t have a say in inviting them, so I don’t feel in a position to cancel.

I do feel guilty for basically doing what everyone else is here, ie. living my life as if COVID is no longer a threat. I know, I don’t know whether I actually have COVID since testing is no longer a thing here either, but I definitely feel this is more than just a very nasty cold.

Hope for My Home #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “starts with ‘ho’”. The first word that came to mind for me was “home”. In less than two weeks, I’ll be at my current care home two years. I remember celebrating the two-year mark in Raalte, almost fully confident that I’d stay there for many more years. In fact, at my care plan review at the end of September (I moved into the care home in Raalte in September too), I said I was 95% sure that I wanted to stay there. “Make it 98%, please,” said my home’s manager. A year later, I had moved to the intensive support home and, as it turned out, the higher-ups in Raalte didn’t want me back.

Another word that came to mind is “hope”. We all could use a little hope, I think. I want to start by saying that, if I celebrate my two-year stay at this home, it doesn’t mean I’ve jinxed (a word I only recently learned of) it and I’ll be voluntarily kicked out of here in less than a year, like in Raalte. I still hope there’s room for improvement in my care and, rather than being shoved around, I’ll finally be able to feel home.

I do admit I have good days. Today, I baked a Biscoff blondie with my staff. That was fun! I just so wish that my life were actually relatively good rather than my having to hope everyday that this day will not suck. Not that a day when I don’t bake sucks, of course. Life is more than Biscoff blondies. But when all I can tell my spouse on the phone that I’ve done today is walk and play dice games, it’s boring. And that’s while my life could be so much less boring if I were able to contribute. And I don’t just mean cooking, baking and crafting. I mean the less interesting tasks of daily life too. I feel accomplished when I’ve helped with some chores around the home. I hope that when, at some point, my new day schedule is created, life’ll be a bit more fulfilling.