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.

March 2026 In Review

Posted on by Astrid

Hi everyone. It’s the last day of the month and that means I’m joining Natalie for her monthly wrap-up. March was a tough month. As I say this, I hear a little voice in my head saying I’ll never be happy anyway as I’m so negative. One of my staff on Sunday said I have nothing to complain about because I get regular support workers and my day schedule is followed. I still wonder how much of my dissatisfaction is indeed due to circumstances that can be changed, such as my day schedule, how much is due to the inherent nature of my being multiply-disabled and living in long-term care and how much is my attitude.

In any case, early in the month I heard that my activity-based day schedule would be taking effect on April 1. That’s tomorrow. Unfortunately, on the same day, the staff’s hours are going to change and this, even though the literal hours they are in the home won’t be cut, means my support will be cut a little. We’ll see how that goes.

I tried to adapt to the new support hours already and this was incredibly hard. I also tried to myself follow a schedule with more meaningful activities. This was partly successful, especially with staff who are already able to help me get more meaningful activities done. For example, last week, one of the staff helped me create a unicorn-themed card for a former fellow resident from the intensive support home, who had her birthday that day.

Thankfully, one staff, with whom until then I’d only been doing dice games and going for walks, herself took the initiative to ask a colleague to orient her to the polymer clay activity.

I have been cooking and baking more than I used to. For example, I baked so-called “healthy” brownies that I fully intended on handing out at the monthly local brain injury meet-up. They weren’t all that good though.

Later, I found out I had a Trojan on my computer that came with the recipe manager app I used to download random recipes off Facebook into, including this “healthy” brownie recipe.

Before I found out I had malware on my computer, I had been obsessing over the idea of cooking vegetarian curries. Most of the recipes, I got off English-language food websites like BBC Good Food, so I’m not sure I’ll be able to use them. After all, though my English is quite good, my staff’s might not be.

Last Saturday, I cooked a delicious cauliflower, tomato and chickpea curry. This recipe was in Dutch, by the way.

Now that I look over this post, I wonder what made the month so tough, given that I once again did more meaningful activities than I used to. I do believe part of the problem is the fact that I’m still not adequately supported when I’m struggling. I mean, highs and lows are to be expected even when you’re having the proverbial time of your life. When people expect me to have a positive outlook because “I have nothing to complain about”, that is horribly invalidating. Life in the care system isn’t great and it isn’t meant to be. I don’t expect to ever rate my days higher than a seven out of ten, but when staff do have this expectation of me, it’s incredibly frustrating. I’m hoping something can be done about this.

Of course, this was also the month I finally realized I’ll never have an okay relationship with my parents. It’s tough realizing I never experienced a proper bond with my parents and even tougher to know that no-one can replace it. However, I do think I’m more capable than I used to believe. I’m not sure how I feel about that.

IQ Is Just a Number

Posted on by Astrid

Hi everyone. Today, Sadje asks in her Sunday Poser whether we’ve ever taken an online IQ test. I have, exactly once. I was about eighteen at the time and randomly looking at tests online. I can’t remember the source of the IQ test and I didn’t pay to get the so-called full report, but the thing said I had an IQ of 118.

Like I’ve said a few times, I also got IQ tests as part of various psychological evaluations many times throughout my childhood. The one that is most prominent in my life right now, is the only one in which I was actually given a literal score: 154. The educational psychologist even called me gifted based on it.

I have mentioned many times how this score is probably way above my actual IQ. For starters, I’d had the exact same test a year prior and had memorized most of the questions. Additionally, contrary to common belief and contrary to my care plan I believe, it wasn’t a total IQ score. When testing the IQ of blind people, usually only the verbal part of the IQ scale is administered. There is a non-verbal intelligence test for visually impaired children that the psychologist prior to the one saying I have an IQ of 154 did administer. Unfortunately, she didn’t give any concrete scores and in fact stopped the test midway through because I got so frustrated. As a result, I have no way of proving that my performance IQ is a lot lower than my verbal IQ. But I’m pretty sure it is.

Sadje at one point points out that intelligence isn’t just knowledge, but also the ability to use one’s knowledge sensibly. Particularly with respect to verbal IQ vs. performance IQ, this makes sense. Verbal IQ is mostly related to academic ability and general knowledge. Performance IQ, on the other hand, requires actual insight and practical skill.

Of course, as someone with a (probably) much higher verbal than performance IQ, I can only relate to how this burdens me. I am horribly overestimated because of my eloquent speech. I imagine the opposite might be true for people with a split in IQ scores the other way around.

Lastly, I want to point out that even within a verbal IQ test (and I assume within the performance one too), people can have spiky profiles. My strength is and always has been in arithmetic. Other relatively strong areas at least at one point used to include Number sequences (a test of memory) and Similarities. My biggest weakness is the part called Comprehension, in which you need to answer questions about social or practical situations. I also often scored below-average on the vocabulary subtest.

The IQ test that pointed to my verbal IQ being 154, was administered in 1999. I had my last IQ test in 2017 and it showed my IQ to be roughly 119. With that version of the test, the strict verbal/performance distinction had been abandoned, but it is safe to say this was my verbal IQ. Even though I’m pretty sure I did decline cognitively between 1999 and 2017, I’m adamant that 154 score is utter nonsense.

With respect to Sadje’s point that intelligence isn’t just knowledge, I’m proof that she’s right. I am still said to have an above-average IQ, but I can’t do the most basic self-care tasks without supervision.

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.

February 2026 In Review

Posted on by Astrid

Hi everyone. I’m joining Natalie’s monthly wrap-up again, as it’s the last day of the month. Honestly, this month was a real mixed bag.

It was, of course, the month it finally dawned onto me that I’m actually declining. I have had this belief for years, but it’s hard having it confirmed by a doctor. Not knowing for sure what the diagnosis or prognosis is, besides it not getting any better, is quite frustrating. I still can’t fully wrap my head around what my physician actually said. I mean, yes, of course literally everyone gets older every single day, but old age, besides the fact that this obviously doesn’t apply to me yet at 39, isn’t a medical diagnosis.

The realization that I’m not getting any better and the thought that I may not even see 2034, has caused me an increased sense of urgency about getting out of life all that I can. Sometimes, this has led me to actually do things I enjoy more than I used to.

I did craft a few things. I also finally hopped onto the cottage cheese bandwagon and baked some goodies. No pictures, sorry. The first time I tried baking with cottage cheese, I added too much almond flour, so the bake became too hearty. I also added garlic powder and suffered heartburn from it all night. The second time, yesterday, I made a breakfast bake with blueberries. I actually enjoyed this.

I also cooked one main meal for my side of the home, another chicken curry. I’m still hoping to cook or bake more often in March, even if it’s just for myself, but I’m less optimistic about it than I was before.


I also, like I shared yesterday, had some days on which I was quite active physically. Early in the month, I struggled to get in any movement at all, so no perfect month for me on my Apple Watch.

I did manage to journal each day (except for today so far, but I’m going to do that after I finish this post). Most days, it was just a quick daily wrap using a template and I’m not so sure it actually helps me, but it doesn’t hurt me either. I only published eight blog posts including this one. That feels a bit disappointing to me.

Some days, and there are more of those than I’d like, my knowing that I’m declining leads to increased inertia. I hope that will get better as the days grow longer and the weather improves.

One last positive: I finally bought a Warmies stuffed unicorn. I have shared a few times about my microwave-safe stuffies that give off a lavender scent when heated. I used to have several, but the last one I had got damaged in the washing machine a few weeks ago. The Warmies ones though have a removable lavender filling. Now that I’ve got the unicorn, I want a few of the others too. By the way, I took the picture of this unicorn myself. I tried a dozen times to snap a better picture, but all of my other attempts were even worse than this one.

This Divorce Thing Stirs Up More Than I’d Like to Admit…

Posted on by Astrid

Hi all. Earlier this evening, I started in a book called something like Bitchslap Journaling. It is a spiritually-based journaling guide. The original Bitchslap prompt is to write down what you desire, need and expect. The author advised readers to use tarot cards for further reflection.

My initial thought re my desire was related to my care. I desire to experience more, do more fun activities, finally create that standing unicorn…

Then I drew a tarot card on Labyrinthos: I got the Seven of Cups. Cups are about relationships and love. Off the top of my head, I can’t remember what the author of the Bitchslap journaling book said Sevens mean and my Kindle app keeps crashing, but it wasn’t pretty.

Today, my wife had a visit from a person to determine the value of our house because of financial aspects related to our divorce. The outcome of this assessment doesn’t change my opinion on financial matters, but it is yet another reminder that we’re truly divorcing.

Last Sunday, when my wife and I were talking about the divorce, I said I couldn’t care less about it. What I meant is I couldn’t care less whether we divorce or stay married, in that little has changed to make me want to divorce. I was pretty clear when we first got married that we wouldn’t be living together. The thought of living together did enter our minds about a month after we got married when a living place that I’d been on the waiting list for over a year for turned out not to be suitable for me. Regular readers know the rest: after years of constantly making up our minds about whether we wanted to live together or not, I was forced to live with my wife because the psychiatric hospital kicked me out. This is one positive of us divorcing for me: the care agency won’t be able to use my wife as an excuse to kick me out.

Other than that though, even though I know rationally that we never had the kind of relationship spouses usually do, this whole thing makes me feel distressed.

I don’t want to go into the details of why my wife and I are divorcing on a public blog. Suffice it to say that, like I said, we never had the kind of relationship spouses usually do. We were always more like best friends than lovers and that’s not going to change. Looking back, we should never have gotten married.

Still, my wife feels like my safe person and I fear that’s going to change once we’re divorced. The house is only a symbol of that. I know that if I showed up at her doorstep saying I was going to live with her again, things’d be much, much messier than they are now. Still though, it hurts to know I essentially signed myself up for a life in institutions and there’s no going back on that one. There I’m returning to my original desire before I drew the tarot card.

January 2026 in Review

Posted on by Astrid

Hi everyone on this last day of the month. I’m joining Natalie for her monthly wrap-up. I started the month with optimism, but as I write this post at nearly 10PM on the 31st, I’m struggling to remain hopeful that anything will ever get better. And is it is, life is a battle.

I fully intended to experience more in the creative and culinary departments in 2026. This was not a total failure in January, but I didn’t start off the year with the bang I’d secretly hoped for.

I did create a few things out of polymer clay this past month. I also crafted a few new bracelets and a necklace. My last crafty project, however, was over a week ago. I created a crocodile out of polymer clay. No picture, as I haven’t even baked it yet. I did make plans with one of my staff to finally create the standing unicorn sculpture I have been meaning to create forever. Let’s hope it doesn’t just remain a plan.

I also didn’t cook a main dish even once. That’s sad, but on the other hand, I did manage to bake a few things. Most recently, yesterday, I baked granola. I ate it this morning with my quark and it was delicious!

In the blogging and general writing departments, the beginning of the month was also a lot more successful than the last couple of weeks. I once again gave up on #JusJoJan pretty early on and only managed to do my Morning Pages for a few days. I do however still have a streak going on in Day One, my preferred journaling app. Granted, I only write some snippets in response to a daily template, but oh well. I still like the Gratitude app, but don’t use it as faithfully as I’d intended. Then again, I realize that pressuring myself to write everyday, isn’t helping my joy.

In other news, none of my staff nor me have heard from the Center for Consultation and Expertise (CCE) yet. On top of that, the behavior specialist went on maternity leave a few weeks ago. She has someone subbing for her, but I doubt this has been communicated clearly to the CCE. Even if it has been, I sort of believe the consultant gave up on me when she got the impression my quality of life is okay.

I realize my support coordinator and assigned staff are well-meaning and really want to help me improve, but I get the impression part of the team doesn’t believe that I deserve or need anything to change. I’m still haunted by the words of my intensive support home assigned staff. She believed that, because of my attitude, there was no way I would ever be happy anywhere. This might be partly true, though it’s not because of my attitude but because living in a neurotypical world as an autistic person is hard. However, just because I’ll never be perfectly happy, doesn’t mean no-one should try to improve my situation. Then again, maybe I’m just one giant nagger of a person.

The Hardest Part of Being Me

Posted on by Astrid

Hi everyone. Today I’m joining the Writer’s Workshop. One of the prompts this week is to elaborate on the most difficult aspect of being you. This is a fitting prompt, as I’ve been struggling again lately.

I could respond to this prompt in several ways. There are things that make me stand out in a negative way in society. For example, autistics are not commonly valued in a neurotypical-centered world. I was reminded of this yesterday when I read an article on the Center for Consultation and Expertise website about the difficulties autistic women in particular face. I for one am often told that I’m only mildly autistic if I’m even autistic at all. This stings, as well my autism diagnosis was confirmed four or five times due to constant doubts among professionals and yet especially for someone assigned female at birth, I’m quite a stereotypical autistic. Yet because I was assigned female at birth, people attribute my behaviors to other things, like borderline personality disorder.

However, autism as a whole isn’t something that is difficult about being me. Rather, the way society doesn’t accommodate me as an autistic person, makes life difficult for me.

Instead, I’m going with a specific trait that might be attributable to autism but also to the brain injury I acquired shortly after birth or other things: my poor distress tolerance and general emotion regulation issues.

These are, like I said, also possibly attributable to autism. Many autistics face these challenges. In my case, it’s however also the fact that these problems are being misunderstood that makes it hard for me to live with them. Like I said, many autistic women/AFABs get diagnosed with borderline personality disorder or the like and treated like they’re purposefully acting out for attention. Emotion regulation difficulties are among the core traits of BPD, yet they are also part of neurodevelopmental conditions like autism or ADHD. I would like to say that even people with genuine BPD aren’t purposefully acting out for attention, but that’s still what the current establishment claims.

I’m struggling in particular with the fact that, occasionally, I seem to be able to cope with distress quite well and at other times, I’m seen as the queen of sweating the small stuff. This has to do with my difficulty figuring out when I’m overstepping my own limits (or when I’m being pushed beyond my limits by others). I honestly don’t know how to break this cycle yet, as when I seem okay, people usually keep adding on to my load of things to deal with. Then when I snap, they see it as me being purposefully difficult. I’m hoping I’ll at some point find a way to deal with this.

My 2026 Word of the Year

Posted on by Astrid

Hi everyone. I’ve been debating for a few weeks now whether to choose a word of the year (WOTY) this year. I did so some years, but haven’t had a WOTY for a few years. I just came upon Deb’s announcement of her WOTY and this gave me the kick in the behind I needed to decide on one.

So what will my word of the year for 2026 be? I’ve had a few on my mind, but finally settled on: EXPERIENCE.

This year, I hope to experience more of what life has to offer. This includes being more mindful of my daily activities, purposefully choosing ones that enrich me. This includes crafting, cooking and baking, blogging and writing in general and reading. Today, despite struggling quite badly and feeling depressed, I managed to craft and write.

Like I shared when writing about my hopes for 2026, I also intend to expand my social circle. I feel rather insecure about this, being that I’m nearly 40, autistic and multiply-disabled. However, I’m embracing the opportunities to socialize that come my way. Today, I did try out Discord again in hopes of finding the community I used to find on forums back in the ’00s. It’s not the most intuitive social networking app, but I’m getting the hang on it.

I should say that I used to do with Discord servers what I do with Subreddits and Facebook groups, ie. I collect them as it were. This needs to stop. After all, social circles aren’t based on the number of likes or comments on a social media post. It’s about quality, not quantity. I struggle with this. It’s probably in part related to my anxious attachment and the fact that I’ve had more than a few groups I was deeply invested in only to be kicked out. Then again, I didn’t invest in genuine personal connections other than with my wife. That needs to change. If I want to experience all that life has to offer, I have to offer a part of myself too. This is scary, but I hope it’s doable.