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…

Trying to Celebrate Small Wins #JusJoJan

Posted on by Astrid

Hi everyone. I have been struggling with mixed feelings about my day schedule and the things I accomplish or don’t accomplish during the day. Sometimes, I feel like there’s been quite a lot I’ve done, but on other days, I focus on the hours I’ve spent staring at the wall.

The difference isn’t just dependent on how much I actually did in terms of crafting, cooking, walking, reading, etc. It’s sometimes also a matter of perspective. I mean, I spent most of my allowed activity time slots just chatting with staff today. I could focus on that and on the fact that, with some help, I could’ve turned them so much more productive. Then again, I could also focus on the things I did achieve. Today, for example, I crafted a polymer clay snake.

It frustrates me to no end that my day activity goal is so vague that it’ll be achieved regardless of what I do or don’t accomplish during the day. I had worded the main goal myself, saying I’d like to do at least one meaningful activity each day. To this, however, my then assigned staff added examples, including dice games, and a caveat that if it looks like I’m in distress or tired, the staff can suggest doing smalltalk or extra moments to lie in bed, saying everyone needs rest. By this logic, each day is meaningful even if I’d spent it entirely in bed.

And that’s not entirely untrue. What makes it untrue is the part where staff decide for me which activities give me meaning and when it’s appropriate for me not to engage in them. In other words, it’s worded as an excuse for staff not to help me find and engage in meaningful activities. If I chose to lie in bed all day, like I did last September when sick with probable COVID, it’s quite different from all the times staff have suggested I lie down. If I chose to be lazy, it’d be on me, but if the staff choose to be lazy and twist it to mean they’re meeting my needs, we’re having quite a different situation.

I do try to celebrate the small wins though. Like today’s snake. That doesn’t mean I can’t wish for improvement, particularly because a lot could be improved without me getting more support hours. Would it be harder on the staff? Possibly, but not necessarily. I mean, listening to me moan about my quality of life, is no doubt exhausting to some staff too. And besides, it isn’t my task to make staff’s work day meaningful.

However, it does help me personally to focus on the things I do achieve rather than the things I don’t. I’m genuinely happy about the snake I crafted. Yesterday, I even did two crafty activities and met my movement goal on my Apple Watch by walking. I try to celebrate that. Celebrating my small wins gives me joy.

This post was written in response to today’s prompt for #JusJoJan, which is “celebrate”.

Janie Mac I’m Nearly Forty…

Posted on by Astrid
Daily writing prompt
What are your thoughts on the concept of living a very long life?
View all responses

Last Monday, I had a meeting with the intellectual disability physician who prescribes my psychiatric medication. The first thing we needed to discuss, was me tapering my antipsychotic. That’s going on, thankfully. However,I also had been complaining for months about increasing tremors in my right leg and hand, decreased mobility and more pain. Unfortunately, according to her, there’s nothing that can be done about these issues to make them go away. I mean, she’s referring me to occupational therapy, but it’s not like that’s going to lessen my symptoms. More like make them more manageable, I hope.

She says my symptoms are due to the brain bleed I suffered as an infant. She however added: “You’re getting older.” Ouch! I’m turning forty this year. That’s not old, or is it?

I’ve always thought that I wouldn’t live a very long life. I mean, my paternal grandma made it to 94 and, when I was a child, my parents thought I took after her. Now, not so much. My other grandparents all lived to be in their late seventies or early eighties. My father will be 77 next week and my mother will be 71 in April. Familially speaking, I’m not at risk of dying young, even though my maternal grandmother suffered from heart disease and diabetes for decades before her death.

However, I do have the brain bleed. Cerebral palsy in itself doesn’t limit one’s life expectancy. Autism, statistically speaking, does. And it’s probably due to my mental health that I won’t make it to old age. I’ve had more close calls in the last few years than I’d like to admit.

My wife and I recently had a discussion about who would go first. She doesn’t cling to life as much as I do, but I’m far more impulsive. I hope both of us will make it to old age and in relatively good health too.

The above song has been on my mind for a few months already. My wife and I have been together eighteen years, but oh well…

Beating Myself Up Over Failed Intentions… #JusJoJan

Posted on by Astrid

Hi everyone. Today I’m struggling quite badly yet again. I’m feeling quite depressed and like life is slipping me by. That’s not good, but sometimes it’s the best that can be.

When I set my hopes for this year, I fully intended to experience more, yet here I am, six days into the year and I’ve abandoned Morning Pages, am in bed a lot again or just blabbering on to my staff about whatever.

However, feeling guilty about not having made the most out of the day, means even more of my time and energy is wasted. Rather than beating myself up over a day gone to waste, I’d much rather make the most out of each moment. And sometimes “the most” is pretty little.

About half an hour ago, I was talking on the phone with my wife again and responded to the question of what I’d done today by saying that I’d gone on a walk and played dice, so not much. Then I realized that I’d also made a necklace. Remembering that made me smile to myself.

Of course, my day schedule is still not working as it should and that might never change, but it’s up to me to make my life meaningful. And sometimes, that means hyperfixating on some random thing, like the fact that I almost certainly finally found the perfect recipe manager. It’s my fifth or so, so this did mean having to transfer my recipes from my previous one into this one. However, this did give me another opportunity to look up interesting recipes.

Now it does often frustrate me that, even though I make plans to cook or bake, they rarely come to fruition. However, like I said above, fretting over this means even more time and energy has been wasted.

This post was partly inspired by today’s #JusJoJan prompt, which is “intentional”. One thing I beat myself up over, is the fact that I didn’t blog yesterday and hardly wrote anything else, so in that sense who am I participating in #JusJoJan? There’s however no jotting police other than my own inner critic.

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.

#WeekendCoffeeShare (January 3, 2026)

Posted on by Astrid

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

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

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

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

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

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

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

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

The Magnifying Glass #JusJoJan

Posted on by Astrid

When I was about eleven, my parents gifted me a magnifying glass for my birthday. It was a small hand-held magnifier that magnified everything eight times. That way, I was able to read large print for a little while longer, albeit slowly. That is until my vision deteriorated even further and, even with the magnifier, I could no longer read the large print atlas that I so loved. That was sad.

Now that I’m totally blind and couldn’t care less about that large print atlas, I do wish I’d kept the magnifying glass. Not for myself, but so that staff can more easily help me with my crafty pursuits. Many of my staff struggle with the detailed work involved in jewelry-making or with reading small print.

Then again, with the print, I could easily point my iPhone camera at it and have Seeing AI, Envision or another related app read the text for me. Intriguingly, yesterday I was chatting with a staff about learning to write and she asked me whether I could still write by hand. I asked her to hand me a pen and a piece of paper and wrote my first name onto it. Envision didn’t give me any feedback, but Seeing AI read everything except for the A. Of course, every letter except for the A was an inch tall. I am however pleased that it was legible by AI.

Not that it’s of any use in daily life. I mean, when I had to get a new passport a few months ago, it was decided that my handwriting isn’t readable enough for me to write my signature. That’s in part because my signature has always been a mess because I never quite understood the concept. However, my handwriting has definitely worsened over the years. I’m glad though that I got the comment on my passport that I’m unable to sign, because that way until I’m due to get a new one in ten years, no-one will ask me to try and then conclude that my signature looks nothing like the one on my passport. I had that problem when my wife and I were buying our house. Thankfully, the solicitor was able to ask to colleagues to sign in my place. Next time, official people will know beforehand thanks to the note on my passport.

This post was written in response to today’s prompt for #JusJoJan, which is “magnify”.

My Hopes for 2026

Posted on by Astrid

Hi all! I’m publishing a second post today to share my hopes for the new year. I don’t call them resolutions and I honestly hardly look back at them over the year, but it’s somewhat fulfilling to notice that I did make about half of my hopes for 2025 happen indeed. In fact, when I was talking with my wife about the year 2025, I realized I’d done better than I had expected, contrary to what I said in my yearly review. Anyway, here are the things I hope to achieve in 2026.

1. Get in more and more varied physical exercise. I am pretty sure that this is going to be a hard one, because it looks unlikely that I can go to the gym regularly or go swimming again. However, there are other ways too, like yoga, pilates, etc.

2. Do more meaningful activities, such as cooking, baking and crafting. This was one area in which 2025 has been less successful than I’d hoped but more successful than 2024. I’m still hoping to make that standing unicorn sculpture I mentioned yesterday happen. However, even if that’s not going to happen, I hope to include crafting and kitchen-based activities in my day schedule regularly.

3. Focus on mindfulness and gratitude. I am finding that even a few minutes in the Gratitude app helps lift my mood. I honestly think this is because it’s something new, but I hope that I can keep up the mojo. I already started this habit in 2025 when I wrote the positives and negatives of each day and E-mailed them to my assigned staff. I’ll continue to do so this year.

4. Improve my wake/sleep schedule. Over the past six months or so, I almost always spent most of the morning in bed. I’d really like to change that. Today was good in this respect.

5. Write more regularly. I don’t just mean blogging, although I seriously hope to do more of that too. I mean, my blogging year was better than 2024, but 2024 was about the most disappointing year blog-wise. I hope to write more this year than I did last year. I also started doing Morning Pages again. I however don’t get up early for them, because I know that’s a recipe for disaster. Rather, today, I did mine after breakfast, when I used to hop back into bed.

6. Further taper my medication. I’m having another meeting with the intellectual disability physician, who prescribes my psych meds, next week. So far, I’m pretty sure I’m still able to further decrease my med dosage.

7. Stay relatively mentally stable. This is an almost obligatory item on the list, as I honestly think the above have covered all I can do to help myself along in this respect. Some of the contributing factors to my deep lows have been related to external circumstances. Now I wouldn’t say I have absolutely no influence on those, but it’s not like I’m all-powerful.

8. Stay true to my wishes and needs with respect to my care. This means, for example, that I will continue to assert my right to informed consent for all of my care agreements.

9. Expand my social circle. Like I shared on Monday, I fully intend on going to more meetings in 2026. At least one of those, the brain injury support meeting, is local. I also intend to go to the nationwide cerebral palsy day in April. I intend to go by myself. In previous years, I went with my mother-in-law, but I’m not in contact with her anymore. Besides, I am pretty sure that, now that I know quite a few other participants, being accompanied by her is a hindrance to my social inclusion more than a help.

10. Be more conscious of my food choices and eat more healthily. I stepped onto the scale yesterday evening and the number wasn’t pleasant. Now I do know that part of that is probably holiday weight and part is the fact that I’ve been moving less. Regardless of my weight though, I seriously hope to be making healthier food choices.

Mindfulness As an Activity #JusJoJan

Posted on by Astrid

Hi everyone. Happy New Year to you all! I’m happy to read Linda has given #JusJoJan another go and I’m going to try to participate again. Today’s prompt is “mindfulness”, which really speaks to me.

When I first learned about mindfulness, I was in dialectical behavior therapy for my emotion regulation issues. All I remember of it at the time were rather abstract concepts like imagining your thoughts are like clouds in the sky. I couldn’t put these concepts into practice at all. I mean, observing my thoughts felt so completely alien to me. Same for mindful breathing exercises. I’ve tried them, a zillion times, mind you, but I always end up being distracted.

Then, a few weeks ago, I was listening to a podcast episode of one of the ADHD podcasts I listen to occasionally. Not that I have a diagnosis of ADHD, but I relate to many of its traits. The episode was about seven different kinds of rest. In it, the podcaster described seven different ways of rest that we all need, including physical rest, mental rest, spiritual rest, etc. None of these in her particular experience involved napping. Also, by doing just one activity, the podcaster said you could be resting in more than one way.

For example, she mentioned going on a walk and, while on her walk, being conscious of every red thing she saw. This is mindfulness in a totally different respect than imagining your thoughts are clouds. It totally spoke to me!

Now of course I’m totally blind so counting or naming red objects doesn’t work for me. But I’m sure the same principle can be applied to sounds or any of the other senses. I’m going to give it a try when I next go on a walk.

December 2025 In My Kitchen

Posted on by Astrid

Hi everyone. As I type this, I’m going half-crazy from all the fireworks sounds. I love New Year’s, but mostly for the ability to reflect back on the past year (which, of course, I could do anytime). Today, I’m joining Sherry’s In My Kitchen linky. I only cooked dinner for myself and my fellow residents once, but did enjoy several other kitchen-based activities.

First, like I think I shared last month, I had planned on cooking another chicken curry but two consecutive staff who would be doing the cooking with me, called in sick. When, in late November, I found out that a staff who used to work here until the summer, would be working a shift again on December 16, I asked her whether we could cook the curry then. She was fine with this as long as I made sure the ingredients were ordered on time. And so I did. We used a recipe from one of my favorite Dutch cooking websites. It called for a teaspoon of curry powder per serving, which I thought was over the top, but it turned out to be good. We even added some chili flakes for some extra spice.

Over the rest of the month, like I said, I didn’t cook dinner. However, I did do several baking activities. This started on December 5 with a spontaneous attempt at baking St. Nicholas cookies. St. Nicholas is celebrated here on December 5, although we’d celebrated it at my home a few weeks earlier. I had gotten a package of cookie mixture with St. Nick and Pete (his servant) cookie cutters. Unfortunately, my staff and I had forgotten to get the butter for the dough at room temperature. We decided to add some melted butter to make the dough stickier, but that made it too sticky for the detailed cutters to work. We decided to go for Christmas-themed cutters, which were less detailed, then.

Unfortunately, my staff did comment that the cookies weren’t all that good-looking. I don’t care.

I had also found a recipe for flatbread made from scratch and really wanted to give it a try. I mentioned this to one of the staff on December 8 and she offered to help me make it the next day. It was delicious! I realize I shouldn’t have taken a picture with my phone of the pan while the flatbread was still baking, as it could’ve damaged my phone, but so far so good.

I decided to top the flatbreads with cheese, bell pepper slices and chili flakes.

Another baking activity took place on December 17, so the day after I made the chicken curry. I made a custard cake. I liked the flavor, but the look wasn’t what I’d expected.



In addition to these longer activities, I did make overnight oats and smoothies a few times. One of those times, I’d been frustrated at a staff refusing to do some tasks with/for me because of how time-consuming she thought they’d be. This time factor is a never-ending source of frurstration for me. However, another staff offered to help me make overnight oats after a walk, when we had only ten minutes left in my activity time slot. Guess what? It was a success!

Of course, like I shared earlier, I helped my wife make our Bastogne cookie dessert on Christmas. No picture of that one. I’m determined to make it for my fellow residents sometime soon.

Overall, the month of December was a pretty good month kitchen-wise. Here’s hoping for even more cooking and baking and other kitchen-based activities in the new year.