#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.

Laughing Over Lemons

Posted on by Astrid

Laughing over lemons. That phrase has been on my mind for a few days. It’s a twist on the phrase “When life hands you lemons, make lemonade.” I think sometimes it’s best to laugh at our worst days.

Like, when I had only been in the psychiatric hospital for a day back in 2007, I was telling psych ward jokes. You know, what’s the difference between the patients and the staff on psychiatric units? First, the patients get better and leave. Second, the staff have the keys. And there was another one. Something about not all patients believing they’re God. I think those last two apply to institutions for people with developmental disabilities too. I mean, particularly at the intensive support home (ie. the home for those with severe challenging behavior), my spouse said the only noticeable difference between the residents and staff was the staff carrying a pager to beep for assistance when a resident becomes violent. Other than that, both staff and residents were usually staring blankly at the TV.

We, the residents, were often blamed. Or at least, the other residents (other than me, that is) were. They have no motivation for life and they are too old to teach. Besides, no-one can force them away from the TV because that would be involuntary care. That’s what I was told. Never mind that I’ve witnessed on many occasions staff telling residents that they had gotten enough “attention” for the day because staff had been sitting with them for fifteen minutes with a cup of coffee.

I am often quite cynical in my humor. If only my cynical jokes weren’t actually 99% truthful. And now all I can hope for is that my joke about everything being okay in 2034 (because the world is going to be blasst to hell) isn’t going to turn out 99% truthful too.

I am linking this post up with Friday Writings. It isn’t necessarily a hopeful or positive post. However, I do feel that laughing over the many lemons life hands me and many other people in this world and age, can certainly be helpful.

August 2025 In My Kitchen

Posted on by Astrid

Hi everyone on this last day of August. We had rain in the weather forecast for the last few days, but it wasn’t more than a drizzle. Hopefully tomorrow there’ll be more.

I’m joining In My Kitchen again even though August wasn’t all that exciting with respect to kitchen-based or other food-related activities. I have a few plans for the first week of September. Here’s hoping I can be more involved in the kitchen over the rest of the month too.

I didn’t cook dinner at all in August, but I did create a few little treats for myself and sometimes my fellow residents. Like, on August 4, I made a mascarpone-based dessert with raspberries and blueberries on top.

I also prepared overnight oats again. The next morning, I added the toppings and enjoyed my healthy’ish breakfast. Now I doubt that it’s actually healthier than my regular breakfast, but who cares?

I made a few smoothies too. In one of them, I put pineapple, spinach and almond milk. My idea was to prove to one of the staff, who didn’t like spinach, that you won’t taste spinach in smoothies. Guess what? We didn’t taste the spinach, but we didn’t taste much of anything else either. I eventually added a banana and some honey, but it still was one of the blandest smoothies I’ve had.

Like I said on Friday, I also have been making coffees with foaming milk on top. The truth is I don’t really like them, but my milk frother was €70 and now it feels less like a waste of money. Besides, my fellow residents like the coffees.

Lastly, yesterday I spent the day with my spouse in our house. We had originally planned to cook dinner together, but ultimately my spouse ended up doing everything. We had an easy broccoli and chicken stir-fry with hot sauce and noodles. My spouse asked me whether it was as good as the meal delivery service meals. 😉 It was a lot better!

Speaking of which, the meal delivery service now has “2.0” written on many of its foods. I get Siam sauce 2.0, for example. Once, I even got “cauliflower 2.0”. Well, what can be improved or changed about just cauliflower? The brown rice doesn’t have 2.0 written on it, but it’s been horribly undercooked lately. I am of the opinion that the higher-ups deciding which meal delivery service to contract, or that the institution even has to contract one rather than operating its own kitchen, should be forced to consume a meal delivery service dinner once a week.

Simple Pleasures #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “simple”. When I saw the prompt yesterday, I immediately thought I had to write about simple pleasures. You know, the little things that make life worth living when all else seems rather grim.

I could of course nag on about the cup of green tea. The one I got at 9PM one day over six weeks ago and that, while enjoyable, also triggered a flood of negative emotions because, really, is life all about a cup of tea? That being said, I’ve tried to make it a more regular habit to ask for a cup of tea at around 9PM.

Most of the simple pleasures I can think of right now, involve food, but not all do. Birdsong is also a simple pleasure I enjoy. So was a shower I took on Thursday when I was feeling particularly miserable.

As a multiply-disabled person living in an institution, I sometimes find joy in things that are out of the ordinary for me even though these things are normal for most people in my country and the rest of the developed world. They are, however, luxurious to people in less fortunate parts of the world. I also realize I am privileged to be able to go online when I want, as even in some other developed countries, people in the care system can’t. That doesn’t mean my life is easy. It’s not. I may have it better than people in many parts of the world, but that doesn’t mean my struggle isn’t real.

However, I do try to find positives each day. It sometimes feels like an obligation, because I used to be told all the time that I’m being negative on purpose. However, it does genuinely help me to acknowledge the simple joys each day provides.