#WeekendCoffeeShare (June 6, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I just had my evening coffee and will probably take a break from writing this post to have my soft drink and chips at 8PM. 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 been less hot and more humid than it used to be. The daytime temperatures this week were often around 18°C and it’s been rainy. We also had quite a few thunderstorms. I’m not liking the rain and still sweating as it’s still warmer than I’d like (is this perimenopause hitting?), but I tell myself this weather’s more normal climate-wise.

If we were having coffee, I’d share that I reached a perfect month with respect to my movement ring on my Apple Watch in May. So far, I’m still meeting my goal each day, though it’s been challenging with the rain. I didn’t complete my monthly challenge for May, by the way.

If we were having coffee, I’d share that I’m still struggling with my care situation and whether it’ll actually work here or not. The behavior specialist did reassure me that they can’t kick me out even if it turns out this place can’t provide the care I need.

I was worried about being kicked out after I had several more incidents in which staff used excessive force and I was quite blunt that I won’t have to put up with it. The meeting with the care confidante has been scheduled for the 16th. The substitute behavior specialist will be gone by then and the regular one will have the meeting with us. She can be a bit, well, challenging. This caused me to feel scared that, if I put my foot down that I won’t have to deal with force unless absolutely necessary to prevent/avert serious problems, she’s going to turn it into a battle around care refusal. I had this experience before. Let’s hope the meeting goes as well as possible.

If we were having coffee, I’d share that I did have some positive experiences this past week. On Monday, my staff and I decided to take pictures on our walk on grounds. I ran them through the image description tool built into JAWS and it was really good.





On Thursday, the same staff offered to help me create a soft pastel drawing using one of my unicorn templates. I hung it onto my bathroom door, but unfortunately it crinkled when I opened the door too many times, so I removed the drawing. I did snap a picture though.

If we were having coffee, I’d share that I cooked dinner twice this week. On Wednesday, I cooked minced meat, rice and vegetables for just myself. I didn’t really enjoy it, because I’d gotten it in my head that the mince was infected with prion-borne disease. My wife, who is a vegan, isn’t the right person to comfort me in this respect (though she did try), but she is the right person to advise me on how to cut back on animal products and eat more healthfully in general.

I decided to cook a vegetarian pasta dish this Saturday. On Wednesday, I had to make a grocery list for it and I decided kind of impulsively to cook the dish for my side of the home. I cooked orzo with spinach and tomatoes. I initially thought I wouldn’t like it (don’t ask me why I picked it then), but I did and so did my fellow residents!

I just ran the photo of this dish through the image description tool and I’m not as content with the description this time.

If we were having coffee, lastly I’d share that the final meeting with the divorce mediator will be on Tuesday. I’m struggling quite a bit with the reality of my wife and I divorcing. I mean, I try to tell myself we’ll remain best friends, but I can’t just shut down my anxious attachment style.

Besides, the behavior specialist does seriously wonder whether I’m in the right care home. I did tell her that, if it turns out it’s in my best interest to move again, I don’t want to be handed over like a parcel, like I was when I left Raalte and when I came here. This does have me consider several factors involved in potential new care homes, including the distance from my best friend. Like, if the most appropriate care home for me is across the country, does this mean I’ll be all alone there? It’s all quite complicated and stressful.

May 2026 In Review

Posted on by Astrid

Hi all! It’s the last day of the month and this means it’s time for my month in review. The month of May was harder than the month of April even and, if I had to summarize my attitude in one sentence, it’d be “I’ve had enough, this is the limit!”. Unfortunately, my saying that I’ve had enough, doesn’t mean people around me actually listen.

The month started with a weekend in which I experienced a major breakdown, during which I expressed quite a lot of hopelessness, leading to suicidal ideation. I expressed my despair in the living room with several other residents present. I realize this isn’t acceptable, but I can’t take full responsibility for the situation either. This among other things led the staff to decide to drag me to my room the next Monday for the crime of appearing in distress while in the living room outside of my one-on-one.

This was the final straw for me with respect to my staff disregarding my rights under the guise of my (or rather, other people’s) best interest and I decided to contact the client confidante on involuntary care. So far, even though I had the initial meeting with her three weeks ago, no luck planning a meeting with my support coordinator and behavior specialist and I doubt it’s ever going to happen. I’m currently at a very low point in my perpetually low trust of the powers-that-be. I would like to say I’ve hit rock bottom, but each time I say this, I realize things can get even worse.

All this does diminish my joy in the fun and meaningful activities I do engage in. Mind you, I still do occasionally do meaningful activities and I might start cooking for my side of the home again soon, but I doubt that with the way my staff are struggling to support me, it’s ever going to work.

My wife and I had two meetings on our divorce this month too. It’s been quite stressful even though we’re in agreement about what we want. The next meeting will be for us to sign the agreement and then our part of the process is over I think.

I’m noticing that, despite my hope of expanding my social circle this year, I’m self-isolating more. I did attend the monthly brain injury meeting this month but that’s as far as it goes. Nobody seems to want to support my hopes and dreams either and this frustrates me to no end, because with my executive dysfunction, I can’t pursue them without help.

I did start working in a neurodivergent-friendly dialectical behavior therapy workbook after I’d had the umpteenth argument with a staff. I’ve also let my support coordinator and assigned staff know I’d like to get help regulating my emotions, but I doubt it’s going to happen in a way that works for me. I mean, my staff obviously would like to see me suppress my needs and feelings again, while I do realize I need to express them less aggressively but this does mean expressing them earlier on.

A few weeks ago, the topic of whether I’m at the right care home was brought to the table yet again. I can’t shake the feeling that, so long as I haven’t become unmanageable to the staff yet, nothing will change and, if/when I do become unmanageable, I’ll be kicked right out. The higher-ups are trying to reassure me I won’t be kicked out “just like that”, but truthfully I don’t know what’d be worse: being kicked out or remaininng in my current place while nothing improves indefinitely.

#WeekendCoffeeShare (May 23, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I originally started typing this post yesterday evening but got distracted and distressed and then never finished my post. It’s now nearly 9PM on Saturday. I just had my evening soft drink but since it’s blazing hot out here, I’ll have to make sure to drink plenty of water. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d expand on my comment about it being blazing hot and talk about the weather. Early in the week, the daytime temp barely got above 12°C and we had rain. On Wednesday, the daytime temperature started to rise and today it’s 30°C. I honestly don’t mind as much, although of course it still being May this makes me worried for the real summer.

If we were having coffee, then I’d share that I am still in the game for a perfect month with respect to my movement ring on my Apple Watch. April was a hard month and I didn’t meet my goal several days. This month, I’m probably not going to meet my monthly challenge goal, but at least I still have a chance at closing my movement ring each day.

Yesterday, the staff and I originally planned on riding the side-by-side bike to the nearby lake for a cup of coffee (and my favorite caramel pie). Unfortunately, the bike wouldn’t work properly so we went for a walk instead and stopped by the institution townhouse for a coffee. They sometimes offer cake too, but apparently not this time.

If we were having coffee, I’d share that I made use of both my culinary activity time slots this week. Today, I baked a banana cake. The bananas should’ve been riper, but it was okay nonetheless.

On Wednesday, I cooked a one-pot pasta dish with broccoli, chicken and pesto sauce. I’ve given up my idea of cooking vegan dinners only, because all the prep is just too hard.

Besides, the behavior specialist noticed how happy cooking for my fellow residents made me and talked to my support coordinator about it. Soon, I’ll likely have a weekly opportunity to cook for my side of the home. Whether this will be full-on dinner prep each week, will have to be decided on.

If we were having coffee, next I’d share that the behavior specialist came by on Thursday for a talk. It’s a shame she’s a substitute, because it looks like she’s much more understanding of my situation than the regular one. I do hope that she’ll be able to talk some sense into the regular one when she comes back in a month or so though.

It isn’t like she wasn’t critical of me, of course. For example, she asked me whether there’s any risk in my writing about my life in the institution openly online for this care agency. I was up front with her that I can be quite harsh in my criticism of my staff and, if they read it, they may recognize themselves. However, I never name my institution or any individual workers. Not that, being that I’m not an employee, there’s any law prohibiting me from naming and shaming the institution if I so wished, but I can see it wouldn’t help my relationship with my staff. That’s why I don’t usually give out my blog address to staff.

One of the positive outcomes of our meeting is the fact that the behavior specialist and I got talking about my IQ. As regular readers of this blog know, the IQ that’s in my care plan was pulled out of mid-air, in that no-one except for me knows where it came from and until now, no-one seemed to care. It turns out she’d been looking for the report and couldn’t find it. Phew, finally! I explained that the report is nowhere to be found except on my personal computer. The report literally dates back to 1999 and isn’t the best childhood psych eval report I have at that. But it’s the one with the catchiest punchline, ie. the three-digit IQ score. I never realized myself until very recently that most staff, being practically educated, go right for catchy bullet points and, as a result, won’t remember the pages and pages of information about my emotional development when they’ve been wowed about my “super high” IQ. In any case, here’s hoping the behavior specialist will finally get this nonsensical number removed from my care plan.

If we were having coffee, I’d then ramble on non-stop about the other issues this meeting brought up. Do you have a couple hours? I just deleted an incredibly long paragraph because I saw my post was fast approaching 1000 words. Instead, I’ll wrap this up and go to bed, as it’s nearly 11:30PM by now.

Asserting My Rights

Posted on by Astrid

Hi everyone. Yesterday’s WordPress daily prompt was interesting. It asked us to explain what freedom means. I was originally inspired to write a post about human, civil and disability rights as they apply to my situation, but got distracted by family matters.

After last week being dragged to my room by both arms by two staff for the crime of being in the living room outside of my allocated one-on-one time and appearing (slightly) in distress, I decided to contact the client confidante on involuntary care. I remember writing about the Care and Force Act when it was just being introduced and being offended at the fact that it applies to anyone receiving care due to an intellectual disability (including acquired brain injury) or neurocognitive disorder (like Alzheimer’s, Huntington’s, etc.), not just institutionalized people. Like, under the old law, you had to be detained in an institution first before anything could be done against your (or your guardian’s in the case of being incapacitated) will. Now even those still living independently can receive “involuntary care”. And just for clarity’s sake: “involuntary care” is a euphemism for anything being done against your will, including being locked in or out of a room, forced medication, etc. As an example, if someone with dementia constantly leaves the stove on, they can be involuntarily locked out of the kitchen. Yes, even in their own homes!

However, after speaking to the confidante, I realized the Care and Force Act isn’t a free pass to do as you please if you happen to be a care provider. In fact, I’m now pretty sure that it’s indeed giving the client more rather than fewer rights, at least if they (or their guardian) knows how to assert those rights. And I know now!

Yesterday, the client confidante came by to discuss last week’s incident with me. I had given both staff involved one chance to talk it over with me before. The one leading the “involuntary care” wouldn’t budge and told me she’d talked it over with the behavior specialist, team leader and my assigned staff. She kept claiming forcing me to my room was in the other clients’ best interest. I learned yesterday that the Care and Force Act isn’t about best interest, but about “significant disadvantage”. This means that someone (either the client involved or someone else) has to be at risk of suffering significant harm (in any form, including psychological) if the “involuntary care” isn’t provided. It also requires that “involuntary care” be the last resort. In this case, the staff asked me verbally to go to my room twice, then threatened to ask her coworker to “help” then gestured to her and then they dragged me to my room. That’s not a matter of last resort!

The other staff involved used to be one of my most trusted staff. She initially blamed her coworker for forcing her into a quick decision, until I learned that they’d talked it over before I even went into the living room. Then she finally half-heartedly apologized.

This incident, however, was only the final straw again. After talking to the client confidante and being informed of my rights, I feel that a can of worms was opened of things that staff (used to) do against my will.

For example, this home is locked as a measure of “involuntary care” for two fellow clients at risk of eloping. This is in itself a questionable measure, but the thing affecting me is my being given a black-or-white choice between the door being opened at every hint that I want to leave or my not being allowed to leave the home without explicit permission at all. A similar thing is staff constantly telling me they aren’t allowed to force me into activities as an excuse to lay back at my every hint that I don’t want to do a certain activity.

Another example is the client portal with my records. I have requested access to it multiple times but the question has always been flat out ignored.

I called the confidante this morning requesting that I be allowed to E-mail her with my further concerns/questions. I did so this afternoon. Earlier this evening, fear hit me hard. What if the powers-that-be decide to give me a choice between consenting to whatever they please and being kicked out? This happened once in the psychiatric hospital and well shotgun consent but they got it.

Same when the social worker threatened to declare me incapable of decision-making and make my parents my guardian unless I signed application forms for a home everyone should’ve known I didn’t meet the criteria for. I sent the confidante another E-mail this evening asking whether the institution could legally do this and, if so, whether there’d be any chance that my parents or sister would be appointed as guardians rather than my wife, especially after our divorce.

The confidante will E-mail my support coordinator asking her to schedule a meeting between her, the behavior specialist and me with the confidante leading the process. She told me I’m allowed to file a formal complaint after that. I’ll give it some thought, but that causes me intense fear too. After all, even if no-one can legally threaten me with forced discharge or guardianship, that doesn’t mean they won’t try.

A Good Mood

Posted on by Astrid

Hi all on this rainy Wednesday. I just found Esther’s writing prompt for this week, which is “mood”. Since I’m in a pretty good mood right now, it feels appropriate to write about it.

Yesterday, I had a meeting with my support coordinator and the behavior specialist who’s filling in while my home’s regular one is on maternity leave. As regular readers of my blog might know, we’re in the process of designing a new, activity-based day schedule for me. Initially, the draft didn’t appeal to me, because for one thing I’d wanted it to include time for me to have a cup of tea in the living room later in the evening. As those who’ve followed me for a long while will know, I introduced this cup of tea last summer and it helped me through a dark period. Of course, I’ve mentioned more than once that if a cup of tea is the only thing to lift my mood during a day or even week, that’s not really all that good. I mean, yes, it signifies that I’m not majorly depressed, but it isn’t particularly a sign of good quality of life.

My support coordinator yesterday told the behavior specialist about my daily positives and negatives, which I’ve been sending out to her and my assigned staff on a weekly basis. She mentioned that my positives usually include activities that have meaning for me, such as crafting, cooking, baking or the like. My negatives usually involve situations in which the staff don’t adequately support me based on my needs of that moment, such as when they place too much responsibility on me.

Yesterday, I for the first time in a while had a day in which I didn’t see any negatives. When I wrote in the Gratitude app in the evening, I even rated my mood as “good”. Not “great”, but I don’t expect to feel great. I usually rate my daily moods as “okay” at best.

I listed several positives yesterday too. One was my having made another batch of homemade granola. This takes only about half an hour total, but it significantly lifts my mood to make it.

Similarly, on Monday, we had twenty minutes left of my long activity time slot in the afternoon after having gone on a walk and having had coffee at the institution townhouse. My staff initially proposed we play a dice game, but I suggested we try making a simple bracelet. My staff questioned whether we’d have enough time to finish this, but I challenged her by saying we could at least try. Usually, I’m the one suffering from inertia because I fear we cannot finish an activity within my allocated time slot. That’s one reason I proposed doing a more activity-based day schedule, of course including approximate times for the activities. Anyway, guess what? We finished the bracelet on time!

Today, if nothing major happens to diminish my mood, I’ll also have a day with no negatives. This morning, I started off by feeling a bit stuck by fear of there not being time for an activity. Thankfully, I pulled myself through it and guess what? I made not just the one thing out of polymer clay I’d wanted to make, a rolling dice for a staff who’s leaving and with whom I used to play dice all the time. I also started on a project for a staff who’s just become a father. Of course, since the dice had to be painted, I didn’t finish it right then, but I did in the afternoon, just on time for the staff’s goodbye.

My support coordinator is definitely right that meaningful activities are what help me get in a good mood. Isn’t that normal though?

#WeekendCoffeeShare (February 27, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s just past 5:30PM as I start typing this blog post, so I’ll still have my evening coffee at 7PM. If you’d like to grab a drink too, feel free to get yourself a cup or glass of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been crazy! Crazy good in my opinion, in that yesterday and on Wednesday, the daytime temp climbed to 17°C. Today we had a daytime high of 15°C and more wind. It’s raining now too, which I’m told is necessary, as the winter has been horribly dry over here.

If we were having coffee, then I’d tell you that I reached my movement goal on my Apple Watch each day this week. Yesterday and on Wednesday, I even doubled it. I also broke my exercise minutes record yesterday. I mostly went for walks, but on Tuesday, I also rode the side-by-side bike to Deventer to get some shopping done. City representatives were having a survey about the bike-friendliness of the city. I accepted the flyer because the person handing it out was making a fuss of how special the side-by-side bike is. And also, we got a free serving of “poffertjes”. Note to self: actually do that survey!

On Wednesday I also rode the side-by-side bike to the nearby lakeshore to have a cup of coffee and a piece of caramel pie. No pictures this time, but it’s the same caramel pie I had a few times last year too. I must say, this place is pretty budget-friendly, in that I only paid €6.95.

If we were having coffee, I’d provide an update on my medical situation. I had bloodwork done on Monday because of increasing IBS symptoms. Thankfully, nothing came out of it. I’m okay just dealing with the pain and discomfort, knowing that at least it’s not something more serious.

This is not necessarily the case with respect to my involuntary movements and tremors. Like I shared on Saturday, my doctor says they’ll only get worse because I’m getting older. I call bullshit to that, in that, while literally everyone gets older, it’s not like I’m elderly at 39. My wife looked up tardive dyskinesia (TD) as a result of medications, which my doctor didn’t mention specifically but then again she never mentions anything specifically. If I have this, there’s some medication for it in the works, but it isn’t available in Europe yet.

My wife at one point mentioned that this medication is prescribed to people with Huntington’s Disease too. I know there are similarities between tardive dyskinesia and Huntington’s, but I didn’t know how far these go. I finally joined a TD group on Facebook and asked. Thankfully, TD is not a death sentence and it may not even progress. That doesn’t mean I’m no longer distressed, because, quite frankly, unlike my IBS symptoms, the involuntary movements significantly impair me.

If we were having coffee, I’d tell you I decreased my antipsychotic again starting today. I’m now on 9mg of aripiprazole. I’d expected to get one 5mg tablet and four 1mg tablets, but for some stupid reason I got nine 1mg tablets. This means I can now just about barely swallow all of my pills at once.

If we were having coffee, finally I’d share that the talk with my support coordinator on Sunday was a bit disappointing. There are several things about my care that frustrate me and she told me it’ll take months before there’ll be any significant changes. Thankfully, she didn’t mean my day schedule. That might change a little sooner. She also scheduled a meeting with the behavior specialist who’s now responsible for my home now that the regular one is on maternity leave. That meeting will be on March 10.

#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.

#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.

I Don’t Owe Anyone a Grateful Heart

Posted on by Astrid

Hi all. Today’s prompt for Reena’s Xploration Challenge is quite fitting. Reena asks us to ponder the paradox of gratitude and resistance.

Sometimes, by being grateful, we can bring about change. I am reminded of a story in one of the Chicken Soup for the Soul books in which nurses on one floor were irritated with another floor’s nurses for their constant negativity. Instead of fueling the conflict by becoming negative themselves, the nurses wrote a lengthy gratitude letter to their colleagues. I am not sure whether this was exactly what the story was about, but this was at least the message I took from it. The fact that the one group of nurses focused on the positive rather than giving in to the other group’s toxicity, turned the situation around for the better.

At other times though, particularly when there’s a power difference between two people or groups of people, gratitude becomes passive resignation. In this case, while it can be helpful in the short term to the oppressed person to keep a positive outlook, if the oppressor takes gratitude as acceptance, in the long run nothing will change.

I will give an example from my own life. Regular readers of my blog know that I’ve been accused of having a negative attitude by many people in positions of power, such as my care staff and treatment providers in various care settings. An example is being told I ought to be happy that anybody wants to work here at all. Well, no. While it’d be easier for me in the short term if I could just accept the umpteenth random stranger for my one-on-one care, in the long run it’d mean I’d always get assigned the random temp worker because regular staff would rather support the others and chill out with other regular staff while they can. Besides, even if it’d cost me less effort to resign than it costs me to rebel, I don’t owe my staff a positive attitude. If there’s anyone for whose sake I should have a grateful attitude, it’s myself.

It doesn’t mean I don’t struggle with this whole idea. I feel intense guilt whenever a staff throws some variation of “be happy anyone wants to work here” at me. I am also constantly reminded in my head of my assigned staff at the intensive support home, who was disappointed in me for never having a perfect day even when they’d followed my day schedule completely and had always assigned me regular staff. Which, for the record, never happened.

I, for clarity’s sake, don’t think violent resistance is the answer. When I have a meltdown over some rule I disagree with, being aggressive will always end in me being restrained. However, there’s a whole world between aggression and passivity. And sometimes, unfortunately, the people in positions of power are so caught up in their reality of being the ones to decide, that they (either willfully or not) ignore my less obvious attempts at resistance.

For example, last week I was trying to resist the “one chance” rule about orienting new staff. I tried going along with what the staff wanted, but this only led to further abuses of the rule. I tried talking sense into the staff, but this didn’t work either. Finally, on Saturday, I had the most massive meltdown. I am not proud of my behavior at all. In fact, I really wish I could’ve solved the issue without being aggressive, if for no other reason, then because the staff are far stronger than me and I ended up being restrained. In the end, I thankfully finally got a meeting with the behavior specialist on Monday and the rule got ditched. Now all I can hope for is that my main message, that I have to consent to every individual rule or agreement affecting me unless the behavior specialist uses the Care and Force Act, got through to everyone.

#WeekendCoffeeShare (July 12, 2025)

Posted on by Astrid

Hi everyone. It’s been a full week since I last wrote a blog post. I really would like to write more, but I’m struggling massively. Today, I’m once again joining #WeekendCoffeeShare. It’s 7:30PM, so no more coffee for me. I didn’t end up having the green tea I mentioned last week, but I might today. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Honestly, I can’t remember what the weather was like early in the week, but the last few days, it’s been good: partly cloudy with some sunshine and daytime highs around 25°C.

If we were having coffee, next I’d tell you that I’m still going strong with my movement goal on my Apple Watch. I never ended up doing those fitness mat exercises I mentioned last week, because I had to cancel my movement therapy session this week. I’m hoping I can do some exercises next week.

If we were having coffee, then I’d share that I’ve been quite depressed lately. On Sunday, I was even talking ending my life and, on Monday, I had a meltdown in which I self-harmed.

The staff who witnessed me talk suicide and who was the only one able to comfort me after my meltdown, asked the behavior specialist and team manager to come and talk with me. This meeting took place on Wednesday morning, but another staff attended it with me. I was masking heavily during the meeting and constantly rationalizing my feelings away. The team manager at the end said that he was glad I was doing okay, because there’ll be a time when he won’t have time for a meeting. That plus something about things possibly getting worse. This caused my thoughts to spiral and this got me intensely desperate. I was able to tell the staff who’d attended the meeting with me, that this comment caused me distress and she would try to relay this to the team manager.

When, about an hour later, the staff who’d witnessed my meltdown etc. came on shift, I expressed my despair to her, By this time, I was inconsolable. I cried and cried and cried and was intensely hopeless.

Finally, the staff contacted the behavior specialist, who came again to talk with me and this staff. This was an okay meeting. I’m still skeptical things will improve, but not entirely hopeless.

If we were having coffee, I’d share that I’ve been reading some books about autism by autistic authors. One is The Autistic’s Guide to Self-Discovery. I’m unfortunately struggling quite a bit to concentrate on it, which in turn reinforces the belief that I’m too broken to benefit from it.

If we were having coffee, lastly I’d tell you that my best friend’s mother came by on Thursday. She brought the new nightstand that she and my best friend had bought at Ikea to replace the one that broke when I fell over it several weeks ago. She also brought me a birthday present: some colors of Sculpey Soufflé, which is a brand of polymer clay I don’t have yet.

We went to have lunch at Hema and then went to the supermarket to buy blueberries and candy bars for me and carrots for her. I also told her about my state of mind, since she’s currently my informal representative. I do want to make my best friend informal representative for me too, especially once we’re formally divorced. I still want my now mother-in-law on it too because she has the capacity to attend meetings with me. However, I mostly want to make sure that in no way are my parents or sister contacted to make decisions about me.