Breaking Point #WotW

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again, as well as participating in the Word of the Week linky. I’ve been struggling intensely over the past few weeks and am wondering how much longer it’ll take before I reach breaking point. Or whether there is such a thing as a single breaking point, honestly. I mean, I’ve been comparing the build-up to my being quite likely burned out to the horrific experiment (I tell the animal-loving part of myself it’s just a thought experiment, but I doubt it is) of the lobster in hot water. You know, the idea that if you throw a lobster into boiling water, it’ll jump right out, but if you gradually boil it, it won’t notice until it’s too late and then it’ll die. Realizing this actually happens makes my inner vegan sick! But I digress…

First, I’d like to talk about the weather. It’s been mild with daytime temps between 14°C and 18°C, but the nights have been a lot colder. We had a little rain early in the week, but none over the past few days and there’s none in the forecast for the upcoming week either.

Then, let me share how things have been going. I’m increasingly overloaded and have had quite a few incidents of crying uncontrolably over the past week. I’ve also been engaging in some compulsive self-imjurious behaviors, particularly at night. I’ve almost literally needed the night shift each night over the past few weeks. Each evening, I’m telling myself I won’t need them tonight and feeling guilty when I do. Most night staff are still understanding and kind, but it’s only a matter of time before they, like the regular staff, will grow weary.

Unfortunately, my support coordinator and assigned staff aren’t on the same page. The rest of the team are all over the place. Most are struggling intensely with feelings of powerlessness. Some admit that they wish they knew how to help me, while others act out their feelings by screaming in my face that if I go on like this, no-one will be there for me anymore. The first group, I feel some level of compassion for even if I don’t know how to show it. The second, I only feel scared of. I’m currently actually terrified for the times the staff who screams about there being nobody for me anymore the loudest will be supporting me. This is the same staff who shoved the “one chance” rule down my throat a few months back, but she’s also the same staff with whom I used to do quite many fun activities. She’s not a bad person or a lazy staffer, but she’s most definitely overworked.

I see it’s a vicious cycle: I’m distressed, exhibit more challenging behavior, which frustrates the staff, who then act out in more repressive ways, causing me even more distress… and unfortunately it’s the staff who show the least harmful repression to me who see the most of my obvious distress. I’m extremely scared of where this will end. My worst fear is the harsh staff being seen as more effective and their actions therefore being reinforced. I’ve heard of more than one current client at this institution being “bullied” (staff’s words) into compliance and I know even the Center for Consultation and Expertise is all for ABA (applied behavior analysis), including in many cases aversives.

I do try to see some glimmers each day. I however sometimes feel guilty when I can’t appreciate them or end up spiraling over some apparently tiny detail when I did enjoy some meaningful activities that day. I constantly hear the staff’s (same staff who screams that soon there’ll be nobody) words that I have nothing to complain about because I get familiar staff and enough one-on-one ringing in my ears. I try to remember my support is better already than it was at the intensive support home, but that only contributes to more guilt over my inability to be upbeat.

Recently, after a few incidents in which I’ve become physically aggressive, I’ve been thinking I should be forcibly medicated or even euthanized. My inner animal lover sometimes contributes to this. If aggressive dogs are put down, shouldn’t I? My wife, who is a vegan, countered that just because aggressive dogs are currently put down, doesn’t mean that’s the way it should be.

#WeekendCoffeeShare (February 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. No more coffee for me today, as it’s nearly 8PM. Please grab yourself a cup of your favorite beverage though and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been all over the place. We’ve had rain, sunshine, temperatures around 9°C and freezing nights. In the province of Groningen, there was a code red weather warning for ice.

If we were having coffee, then I’d share that I haven’t been very physically active again this past week. That is, I did go for walks almost each day, but I didn’t do any other exercise.

If we were having coffee, I would share that I however was quite crafty over the week. I made a bracelet and tried making another one. I also tried to work with a texture mat on polymer clay for the first time today. The result was interesting.

If we were having coffee, then I’d tell you that the homemade granola I baked last week was a great success. I made another batch on Wednesday, this time adding instant coffee. This one didn’t turn out as awesome as the previous one and I’m not sure whether it’s the nuts maybe having gotten slightly burned or it’s the coffee flavor not matching well with the other flavors. I gave some to a fellow resident who likes trying homemade food, but he didn’t like it.

If we were having coffee, I’d tell you that I finally heard from the Center for Consultation and Expertise (CCE) consultant. I received a short note describing recommendations she’d make to my care team. She’s going to provide continuing education to the care team on these things.

I don’t know how to feel about the whole thing. On the one hand, I’d like to see her saying she’s going to educate the team as a sign that I don’t need to change but the team’s approach to me does. On the other hand, it still stings that she hardly spoke to me and not at all without the staff being present. I still have quite a lot of questions, but her work with me has ended with this letter.

If we were having coffee, I’d tell you that the occupational therapist came by here this week to shed some light on ways to help me cope with my hand tremors. She hoped a weighted wristband would help. I was initially quite optimistic, but on the first try when my hand was trembling, I noticed it not only made no difference in that respect, but the thing was in the way when I tried to operate my iPhone.

I from noticing that got rather frustrated once again about the doctor not being clear about what causes these tremors. She claims it’s aging, stress and maybe medication, yet refuses to taper my meds more quickly. I’m kind of worried that, like the CCE consultant and practically everyone involved in my care, she’s not giving me the full story. I know I have a right to information regarding my medical care, but there are exceptions to this when the clinician believes this information would significantly harm the patient. If this is the reason I keep getting only vague comments about my medical situation, I want to tell my physician I’ve already envisioned the worst and the uncertainty is more harmful to me than it would be knowing I have, like, a neurodegenerative disease.

If we were having coffee, lastly I’d share that my ears are blocked and I hardly hear a thing out of my right ear. I will get them syringed on Sunday.

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.

2025: The Year in Review

Posted on by Astrid

Hi everyone. It’s time for my yearly review. This year wasn’t exciting in any particular way. I’m not sure whether that’s actually a bad thing though. I mean, I didn’t decide to move yet again and that’s a good thing. Most of the bad parts of the year not being exciting are exactly that: it was incredibly boring.

That’s also what led to the most significant lows of this year: the fact that, for a while, an extra cup of green tea at 9PM would be my highlight of the week. I have, over the past couple of months, been able to make this cup of tea a regular occurrence, so in that sense things are improving.

When I looked at my hopes for 2025 a few days ago, I noticed most of them weren’t particularly ambitious. I mean, I was hoping to improve my crafting and do more cooking. I can’t remember whether I had already tried to ask ChatGPT how to build an armature for a standing polymer clay unicorn and, as such, whether this idea was behind that hope. If it was, I can safely say that I didn’t achieve this. I must say I haven’t improved my polymer clay skill much at all. I have, however, picked up jewelry-making again and my wife loved the necklace I made her.

I also did a lot more cooking than I did in 2024. It wasn’t as much as I’d hoped when the behavior specialist promised me early this year that when my one-on-one got approved, she’d allow for a weekly cooking activity. I am cautiously optimistic that this will change in 2026.

I had also hoped to find a physical activity other than walking that I could do regularly. No such luck. I’m not sure this will change in the new year.

Tapering my meds was one of the major successes of this year. I can’t remember what dose of aripiprazole I was on at the start of 2025, but I’m now down to 11mg a day and have also been able to completely go off my pregabalin. I also must say that I’ve been able to stay relatively mentally stable. Yes, I did have a deep low in July, which is once again down to the fact that I had been going through the motions for so long that life felt like I was not really living it.

This year was also the year we had yet another Center for Consultation and Expertise consultation. I haven’t yet found out what the consultant is going to recommend even though she said she was going to let me know by mid-December. I doubt it’s going to lead anywhere significant, but maybe I’m wrong.

Finally, this year was the year my wife and I were trying to figure out our relationship status. Over the summer, we were planning to get a divorce, but this eventually didn’t happen. We’re still unsure as to how to align the legal situation with our actual feelings for each other and it looks likely divorce will be on the table sometime within the not-too-distant future again. Thankfully, we’re both pretty sure that we’ll always be best friends.

One of John Holton’s writing prompts for this week is what letter grade we’d give 2025 and why. I’m clueless about letter grades, so I’m going to rate the year on a scale of 1 to 10 as is the grading system here in the Netherlands. My rating would be a 5, which is just about below-average. Things that would improve the grade I’d give next year, are mostly related to my having more meaningful activities.

The Good and the Bad: How I’d Rate My Days

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is rather relevant for me. In it, Sadje asks us how we’d rate our day. I’m not going to pick a specific day, but use this as an opportunity to write about the quality of my days and as such my quality of life.

When the Center for Consultation and Expertise consultant met with me last September, at one point she asked me how I’d rate my quality of life on a scale from 1 to 10. I find this difficult to say, as some days just about completely suck while others are okay or even somewhat joy-filled. I said that, on my absolutely awesomest days, I’d still rate them 7 out of 10 due to the fact that I experience pain and other forms of discomfort daily. Honestly though, I’m being optimistic when I do this. Even on my greatest days, after all, I hardly experience any noteworthy things. Like, I consider cooking or crafting to be enjoyable, but is my day really more than just about okay when I have done one of these?

This also signifies that my life could still very much be improved with just a few in my opinion relatively minor changes to my care. However, my staff see it differently, because they believe I can’t do a cooking or crafting activity when I’m in distress and, I believe, they also think I should be happy with just a walk and a dice game each day. Which, honestly, I’m not.

This makes me feel bad. In the words of my assigned staff at the intensive support home, when the staff follow my day schedule perfectly and I get all familiar staff, my day should be perfect. I replied, in my opinion truthfully, that no-one ever has a perfect day.

Now, to answer Sadje’s question about how I’d rate today: I’d probably rate it a 4 out of 10. I was rather distressed due to another incident yesterday. I also didn’t get to do anything other than go for two walks and play a game of Yatzy. I did, however, manage to do some reading and, as you can see, am writing this blog post. This signifies that, despite my distress, I’m still relatively able to function. My days could still be a lot worse. Besides, I had a cup of green tea in the evening. Oh wait, there I was being cynical, because green tea has become my symbol for how I actually feel about my life: when a cup of green tea is the highlight of my day or even week, that’s rather odd.

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”.

#WeekendCoffeeShare (September 27, 2025)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare for the first time in over a month. It’s nearly 10PM as I start typing this, so no more coffee for me. I did have a mug of green tea about half an hour ago, but for now it’s just water. Feel free to grab yourself a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. Not that I’ve experienced much of it, as I spent most of the week indoors with what I believe to be COVID. The daytime highs most days have been around 17°C and we didn’t get much rain.

If we were having coffee, then I’d share that I paused my activity rings on my Apple Watch because I was too obsessively trying to meet my goals while being sick. I originally intended to restart them yesterday, but for now they’re on pause until this coming Tuesday.

If we were having coffee, then I’d tell you that, today, I finally feel like I might be on the mend. Being me, I did immediately go for a 30-minute walk. My average heartrate was 140BPM, which is high even for me. Let’s hope I won’t be exhausted tomorrow.

If we were having coffee, then I’d share that my spouse finally visited me today. We hadn’t seen each other in a few weeks even though it was our wedding anniversary on the 19th. Then though, I was sick with that could-be COVID thing. Today, we still didn’t do a lot. We went to a nearby pancake place to have lunch.

If we were having coffee, I’d tell you that, on Wednesday, the Center for Consultation and Expertise consultant came by. Like I said on Tuesday, I was only informed a day in advance and the consultant gave as little information about herself as she could (ie. just a first name). I feel incredibly distrustful of the entire process because of this. One of my assigned staff, the student, attended the meeting with me and it was more her telling the consultant what she thinks could be improved about my situation than me. I honestly fear this whole consultation is going to be a waste of time and money, as if the staff already know what I need (which, frankly, they don’t), why involve an independent consultant?

If we were having coffee, lastly I’d share that the student who’s my assigned staff, is leaving on Monday. She’s going to work at the intensive support home I used to live at and I’m struggling not to use that against her. I did, with some difficulty, create a necklace for her, which I’m going to give her when she has her last shift here.

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.

#WeekendCoffeeShare (August 9, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s 7:30PM, so I just had my last cup (two cups, in fact) of coffee for the day. I’ll probably take a break from writing this blog post for my soft drink at 8PM. Please join me as we chat.

If we were having coffee, first as usual I’d talk about the weather. It’s truly beautiful! Today, the temperature rose to 25°C and it was quite sunny. Rain isn’t in the forecast until next Thursday I believe. I know, climate change and all, but I’m enjoying the summer while I can.

If we were having coffee, I’d share that I am still going strong with my physical activity goals. Yesterday, a staff mentioned the trampoline that’s on the campsite near the institution and we decided to check it out. Today, I went on the side-by-side bike with another staff. Because of this as well as having walked a lot today, I might break my active calories record according to my Apple Watch.

If we were having coffee, next I’d tell you that I unfortunately haven’t been crafting much lately. On Sunday, I created polymer clay earrings that are still waiting to go into the oven. Other than that, no crafty endeavors.

I did, however, create a dessert for myself and my fellow residents on Monday. It was good.

If we were having coffee, then I’d tell you that the rest of the week was quite hard. There’s this temp worker who is absolutely clueless about how to support me and yet he’s assigned to me almost everyday. Staff keep saying I should be giving him feedback more when he’s acting in an unsupportive way. First of all, well, no, that’s not my responsibility. They don’t ask the other clients to give feedback either, but when I point this out, they say it’s different for them because they can’t. I can, sometimes, a little bit and I tried this week in fact, but the temp worker didn’t learn a thing from it. Then I get told that the staff assign to me who they choose and it’s my responsibility to deal with it.

I also was told that, when the staff feel someone is trained well enough to support me, they will be assigned to me and I don’t have a say in it. All this comes across as if it’s me being deliberately difficult with certain staff based on arbitrary things, while in reality it’s the way that they act that makes certain staff more difficult for me to deal with than others. Besides, I’ve had staff assigned to me who themselves don’t even feel they’re capable enough just because these staff want to please and their colleagues pressure them. It may be easiest for staff to assign the most inexperienced temp worker to me because I try to be helpful and, when I am not, it is easy to blame me for allegedly playing favorites.

If we were having coffee, lastly I’d share that the Center for Consultation and Expertise found a suitable consultant for my case, but due to the summer holidays, the first contact won’t be until the end of August. This will unfortunately be a phone call with the behavior specialist. I’m not very trusting of the whole process at the moment, to be honest.