Share Your World (January 12, 2026)

Posted on by Astrid

Hi everyone. I’m joining Share Your World again. Loved this week’s questions. Here goes.

1. How would you describe your laughter? (giggly, deep, infectious? etc)
I think when I truly laugh out loud, my laughter is pretty deep especially for someone assigned female at birth. I don’t really like it, but I prefer it to my non-laughing voice. My voice is quite low for a woman’s, which I don’t mind, but it has some weird screechy feel to it. Eek!

2. What makes you smile?
Lots of things can make me smile, but I am told I especially have a wide smile on my face when recounting fun activities I’ve engaged in recently.

3. Have you ever cried with laughter, and if so, can you remember the circumstances?
Not that I remember.

4. Have you ever laughed at an inopportune moment?
Absolutely. I am an extremely detail-oriented thinker and this means I sometimes laugh at a detail that’s funny even though the bigger picture is rather sad. An example I’ve mentioned quite a few times is the moment a fellow patient in the psych hospital told us that he had been diagnosed with incurable cancer. He for whatever reason needed to name a staff member, but couldn’t remember her name so instead said “fat troll”, referring back to a moment he’d insulted this staff himself. I immediately burst out laughing.

Gratitude

For today’s optional gratitude section, I decided to look into BrainyQuote, an app and website with quotes on it, for a quotation on humor or laughter. I found numerous. Here’s but one of them.

"Comedy is simply a funny way of being serious." - Peter Ustinov

Indeed, this quote shows that the line between satire and reality is often blurry. I in this light remember a story on a satirical Dutch “news” site about riots because an aggressive wolf had been shot. Two weeks later, it actually happened.

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…

Reflections on Being a Thrown Away Golden Child

Posted on by Astrid

I’ve been struggling with memories lately, as well as with the role I played in my family. I was for the most part the golden child. For those not aware of what this means, this is the child in a family in which one or both parents are narcissists or otherwise emotionally immature, who ends up being the parents’ favorite.

My parents often half-jokingly (though it wasn’t funny) said that my younger sister was oh so nicely average. More like invisible, I’d say.

I, on the other hand, was exceptional in both positive and negative ways. I was a genius when doing calendar calculation, which for your information is a common savant skill in people with developmental disabilities. By contrast, I was threatened with being thrown away into institutional care and called all kinds of insults for people with mental illness when I was acting less than excellent. I at one point thought of printing out the table of contents for the DSM so that my parents at least knew the correct terms for what they were calling me.

Then, when I was admitted to the psychiatric hospital in 2007, my parents more or less actually threw me away. No, that’s not even entirely true: they threatened to abandon me when I announced that I was taking a second gap year in order to work on independence skills in 2006 and only came back into my life after the independence training home promised to prepare me for university and independent living. Which they couldn’t.

I struggle with both the fact that I was thrown away and the fact that I was my parents’ favorite before that. After all, it adds an extra layer of shame to my life: the layer of “if only…”. If only I hadn’t taken that second gap year… If only I hadn’t consented to being admitted to the psychiatric hospital… If only I hadn’t applied for long-term care… would I still be the hero… in my parents’ fantasy tale? In other words, isn’t it my choice to have fallen off my parents’ pedestal?

I don’t know how I feel about the idea that it might’ve somehow been my choice to be thrown away. On the one hand, I feel it makes me responsible for not having a “normal” relationship with my parents. On the other hand though, I know how many golden children turn out and that’s not pretty. Many end up repeating their parents’ toxic patterns with partners or children.

I’m forever grateful for being childfree for this reason (and others), as just today I had a memory of shoving my and my wife’s then cat Barry out of the bed. I feel forever guilty about this and the very thought of doing this to a child, makes me sick.

Remembering this and other things makes me realize I’m glad I didn’t stay in the golden child role. If I had, I might as well have ended up in prison… or should have.

#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.

IQ Tests and Final Exams and Psychological Assessments, Oh My!

Posted on by Astrid

Hi all! Today, Esther’s weekly writing prompt is “tests”. Oh my! This made me think of so many things. IQ tests: I’ve had half a dozen or more during my life. Final exams: so glad they’re over with and it’s been twenty years since I graduated high school. Psychological assessments: I still have a love-hate relationship with those. And that goes for tests in general, I guess.

After all, as a child, I didn’t mind taking IQ tests. When I was twelve, I got the infamous Wechsler IQ test, well, the verbal part of it, since I’m blind and the performance part isn’t accessible. I got a score of 154, which, according to the psychologist, indicated giftedness. I’m pretty sure there were all sorts of things wrong with that assessment though.

When I was 30, I got another IQ test, Wechsler again but the adult version and now they removed the clear distinction between verbal and performance IQ so the report just said I got “parts” of the test. My overall IQ score had dropped to 119 I believe. That’s still above-average and I’m pretty sure that’s correct. However, I wish there were a performance IQ test for blind people, because I am pretty sure that’d show where my real limits are. Not that I’m proud of being disabled, but I am and if it could be proven on a test, that’d be much better than an ever-changing psychiatric diagnosis.

Final exams. Like I said, I’m glad it’s been twenty years since I graduated high school. My final exams were quite frustrating, as not only was I horribly nervous, but my computer crashed once in the middle of the test. I graduated from what in the UK is called grammar school and honestly I have no clue how I did it. I mean, well, I know, sort of: the same way I “passed” my IQ tests, ie. being a pretty above-average memorizer. Too bad that a good memory and decent academic skills don’t get me far in life. It takes more than test-taking abilities to be successful, after all.

Flash Fiction: Of Fish and Tape (Or Horses and Receipts)

Posted on by Astrid

A fish swam in the ocean with a roll of sticky tape in its mouth. It was a copycat really, because it learned to carry something in its mouth from the stick horse a little girl once created for her teacher’s St. Nicholas surprise. The attached poem read
A wooden horse
Without a tail
Flew quickly towards the sun
With in its mouth a receipt
Of an already-eaten cake.

That poem was better in Dutch, as the girl was me, but it was still silly. At least it rhymed in its original Dutch version.

The fish didn’t know this, of course. Its picture had been drawn or otherwise created some 30 years after the girl’s original poem. And even if the fish knew, it didn’t care.

I do wonder though, isn’t a roll of sticky tape far too large for a goldfish? It will know very soon. Or not.

This piece of silliness was written for Simply 6 Minutes. It’s 148 words. My original poem was:
Een houten paard
Zonder staart
Vloog pijlsnel naar de zon
Met in zijn mond een kassabon
Van een opgegeten taart

School Reunions

Posted on by Astrid

Hi everyone. One of this week’s Writer’s Workshop prompts is to write a post based on the word reunion. This reminded me of two reunions, one I actually attended and one I didn’t.

The reunion I did attend was for the school for the blind I had been a student at for my last three years of elementary school in the late 1990s. The reunion took place in 2008 and it was on school grounds. The reason the reunion was held, was the fact that many buildings would be reconstructed in the next couple of years, so as to give former students and staff one last chance to see school grounds in the form they’d remembered them.

The school included buildings for both elementary and secondary school, as well as homes for the residential students and a place for leisure activities where the non-residential students had lunch too. I was a non-residential student and only attended elementary school, like I said.

There were two reasons why I wanted to attend the reunion. One was to meet former fellow students and staff. That was a success. I met my best friend from school, with whom I hadn’t been in contact since leaving this school in 1998. I also briefly talked to my fourth grade teacher. That was awkward, as I didn’t feel comfortable disclosing to him that I resided in a psychiatric hospital at the time.

The other reason I wanted to attend the reunion, was to see the school in the form I remembered. That, unfortunately, wasn’t a success, because part of the elementary school, including the classrooms, had been destroyed in a fire in 2006. Part of the building was still standing, but it was no longer useable.

I was on grounds a few more times attending smartphone use training in 2017. On May 24, I believe, there’s going to be another reunion for this school, but it isn’t on grounds and I know no-one who will be attending, so I won’t either.

This brings me to my other reunion story. IN 2013, my high school celebrated 100 years of existence. I for a while considered attending, but was still in the psych hospital at the time and besides, my entire high school experience had been quite bad. So I didn’t go.

A few years later, I got an E-mail from a former teacher there. She had been my Dutch teacher and tutor for the first year and part of the second year of my attending this school, until she went on sick leave and finally found another job. She had been at the reunion and had wondered about me. Having read part of my website, she now understood why I hadn’t been at the reunion.

This, as it turned out, would also have been my last chance of meeting the teacher who’d become my tutor after the Dutch teacher left. He got cancer about a year after I’d graduated high school in 2005 and died in 2016. I am pretty sure it was for the better that he didn’t know that I was still in the psych hospital then.

Neurospicy Burnout

Posted on by Astrid

Hi everyone. A few days ago, I listened to a podcast episode on autistic burnout. It’s the most recent episode of Beyond Chronic Burnout, a podcast for autistic women (and other marginalized genders, I hope) and their helping professionals. It discussed the Spicy Pepper burnout questionnaire, which apparently is a questionnaire to determine your level of burnout. I got overloaded trying to find the actual questionnaire amid all the ads etc. and it looks like the website it was published on, isn’t particularly screen reader friendly, so I wasn’t able to take the test. However, from the descriptions discussed on the podcast, I believe I’m in quite a significant burnout and have been for, well, years.

What is autistic burnout, you might ask? Autistic burnout is like regular burnout from being overworked, but it is really more like being overworked living life in a world not designed for autistics. As I have said for many, many years, just living in a neurotypical world is hard work for me.

I want to clarify that autistic burnout is often amplified by co-occuring conditions such as ADHD. In fact, writing this just reminds me of something I read several years ago that said that having fibromyalgia, which is often agravated by stress, is often correlated to ADHD. This is why I refer to neurospicy burnout.

The podcaster claimed that the first signs of burnout in autistics usually appear between the ages of four and six and many autistics experience their first actual burnout between the ages of six and ten. This was hugely validating. I, at age five, fell ill with what my parents claim was the flu, but it did lead them to get me into special ed quicker than originally intended. Age seven is always when my parents claim I changed from a cheerful, happy child to angry and depressed. This correlates with my having to start learning Braille, so according to my parents I then became aware of my declining vision. This is probably correct, but it doesn’t mean that my difficulty accepting my blindness was the only or main problem.

The first warning sign of autistic burnout, the podcaster says, is suicidal ideation. Oh my, can I relate! I honestly always thought that the first sign of burnout, whether neurospicy or work-related, was exhaustion. That with the fact that I react to overload with overactivity and irritability, always made me believe I’ve never had “real” burnout symptoms. Now I realize that I may not have fully collapsed (yet), but I do certainly experience burnout. And have for, well, my entire life since I was seven, I guess.

#WeekendCoffeeShare (March 29, 2025)

Posted on by Astrid

Hi everyone on this last Saturday of March. I’m joining #WeekendCoffeeShare today. It’s nearly 8PM as I write this, so no more coffee for me. However, a fellow client’s parents brought us cheese, sausage and maybe other little snacks to go with our soft drinks this evening. I’ll have apple and peach-flavored Dubbelfrisss as usual. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. It’s been mild most days with daytime temperatures around 15°C, though night-time temps have been around freezing. We had a little rain on Sunday I believe, but I think that was before I woke up. Honestly, I’m pretty sure nature could use some showers.

If we were having coffee, then I’d talk about my physical fitness routine. I am still going strong with my goal of a perfect month on my Apple Watch and, on Thursday, got in over 20K steps again.

If we were having coffee, then however I’d moan about my tremors. I’ve mentioned a couple of times that my right leg trembles horribly sometimes and, usually when it’s been happening, the rest of my body follows suit and starts twitching. Yesterday, it was really bad. My intellectual disability physician usually says it’s most likely influenced by stress, though both of us know that my medication (particularly my antipsychotic) could be causing it too.

With respect to my meds, I’ve often been reacting out of fear of becoming unmanageable and for this reason asking for a very slow taper. My physician has been constantly asking whether my life will become more difficult soon due to for instance more temp workers, because apparently that’d be a reason not to taper further for a while. Now I’ve decided that being manageable is not a reason to put my body through the effects of strong meds. Besides, yesterday I had an aggressive meltdown precisely because I couldn’t cope with the tremors anymore. Now thankfully on Monday my staff will contact the intellectual disability physician, my GP or both.

If we were having coffee, I’d also moan about my shoes. I’d worn one pair of orthopedic shoes for only a week last Thursday and they were already badly damaged. The physical therapist took a look at them and said she thought the orthopedic shoemaker might not have done the last repair properly. I’m not sure that’s the reason they get damaged so quickly. On Friday though, the physical therapist came by and took a video of my walking, which she is going to compare to a video she took about half a year ago. I’ll see her again next Friday and hope she’ll have some ideas.

If we were having coffee, I’d share that I’ve been having bad memories of my time in the mental hospital. Like I said above, the intellectual disability physician here constantly talks about the possibility of more temp workers as an excuse not to taper my medication. This was precisely why I was prescribed medication in the first place: I’d become severely irritable because of the large number of temp workers at the time and my psychologist was threatening me with seclusion if I continued to have meltdowns. Similarly, when on the locked ward, I was literally told I’d be locked up in the “quiet room” if I needed more care than they could provide. I realize rationally that this is institutional abuse, but I’ve internalized a lot of all the bullcrap institutions feed me.

If we were having coffee, I’d end on a somewhat positive note by sharing that the behavior specialist finally filled out the forms to get the Center for Consultation and Expertise involved on my case.

Today’s Small Joys (March 16, 2025)

Posted on by Astrid

Hi everyone. I’m struggling a bit but don’t want to share why. Instead, I’m sharing some small joys from the day again today. I’m participating in Sunny Sunday. Here goes.

1. Sunshine. It’s chilly (about 9°C in the afternoon) but sunny. With this being the case, my partner and I were even able to sit outside for our lunch.

2. Good coffee. The lunch we had was a bit disappointing to me especially considering how much it cost, but the coffee was good.

3. Being able to wear a nice, handmade necklace and being complimented on it by my spouse. I bought glass beads and wire a few days ago and I created my first necklace with them yesterday. I wore it today, which made me feel good.

4. Finding a couple more necklaces, most handmade by me many years ago, in the bag my spouse brought me after clearing out the house.

5. Unicorn soft toys. I was clearing out my box of stuffies this evening, because my spouse had also brought me some stuffed animals and my box was already quite full. I didn’t seriously know how many unicorn soft toys I have. Those, I all kept.

6. Looking forward to the sensory room the staff are creating on the other side of the home. I actually plan to donate some of my unwanted soft toys to that project.

7. Finding one of my first polymer clay creations in the bag too. It’s a baby. It’s extremely ugly, so I threw it away. However, remembering my making it, as well as realizing how far I’ve come along on my creative journey, made me smile.

Honestly, many of these things are more nostalgia-inducing than purely joyful. Remembering the good times is a positive thing though, so I’ll still focus on that.