Care Professionals’ Behaviors That Anger Me

Posted on by Astrid

Hi everyone. Today in her Sunday Poser, Sadje asks what angers us about other people’s behavior. I’m going to list some things that anger me about care professionals’ behavior specifically. Here goes.

  1. Care providers claiming they have clients’ best interest in mind. Of course, sometimes they do, but in reality, they have many more people’s interests to take into account. It isn’t feasible for a care provider to only have the client’s best interest in mind, of course, because well the client isn’t alone in this world. That’s life for everyone. But not acknowledging that it’s worse in care settings, is one reason staff continue to abuse their powers.
  2. Assuming clients are manipulative. I’m truly unsure of how this belief comes about. I have an inkling that most people in positions of power are at least somewhat manipulative themselves and it’s projecting their own actions onto others that causes them to assume clients are manipulating.
  3. Staff ignoring impairments that aren’t glaringly obvious. In my case, this is everything except for my blindness and, well, even that gets ignored at times.
  4. Professionals deciding what a “meaningful life” is for clients. There’s this support method for people with challenging behavior called Triple-C. In theory, it looks great, because the focus is on clients’ needs for trust, connection and a meaningful life rather than on the challenging behavior itself. However, it becomes harmful when it’s misused by staff to dictate what a meaningful life is like for clients. The words “normal life”and “meaningful life” are used almost interchangeably by certain people proclaiming to use this method. It’s not even wrong in itself, but it does become problematic when staff decide what a client’s priorities in this “normal life” should be.
  5. Care providers misusing the fact that they don’t scream at/hit/otherwise abuse clients as a reason why the client shouldn’t be displaying challenging behavior. I always respond by telling staff that I don’t drag them to another room when they’re annoying me either, so why do they do this to me?
  6. Care providers purposefully limiting clients’ choices just for the sake of it. I mean, yes, no-one has full control over how they live their lives, but it’s a lot worse in care settings and not because it should be.
  7. Care providers randomly invading clients’ spaces and treating the client’s space like their own home. For example, I still have to make most staff aware of the fact that they don’t get to randomly open and close my doors and windows without my permission. Yes, they can ask whether they can do this and I’ll usually give them permission when they explain why, but this isn’t their own space. Similarly, random staff blocking my way out of my room without it being a Care and Force Act agreement just because “they have to support me”, angers me to no end.
  8. Staff being overly friendly when we’ve just met. “Hi Astrid, how are you?” without even saying their name first. This is a relatively minor annoyance compared to the others, but in the intensive support home I’ve refused a temp worker entry to my room because he introduced himself as “your staff”. These are, interestingly, also usually staff who claim to like working with me even though they barely know me. They’ll ask a ton of questions but not disclose anything about themselves. Creepy!

All of these things boil down to staff not realizing (or not caring) that professionalism isn’t the same as being authoritarian. This distinction is incredibly hard to explain. For example, I’ve been to several staff’s homes and none of these staff I considered to be creepy. I think a staff who is overly businesslike can be as annoying as a staff who is overly amicable. Usually, interestingly, the bad kind of staff combine the two.

First Steps in Finding a (Truly This Time, I hope) Suitable Care Home

Posted on by Astrid

Hi everyone. It’s been a full week since I last wrote a post on this blog. This week has indeed been full. Not necessarily in that anything spectacular happened, but I’ve been hyperfocusing on the home-finding thing.

This is one reason I finally changed my tagline. I’d been annoyed at my old one for years, but could never think of a more appropriate one. Looking back, it should’ve been easy.

So here I am chronicling my complicated care-finding process. I have been looking up various options online and talking to people on Facebook. Specialist client support hasn’t contacted me yet even though they said they would do so this week. Here’s hoping they’ll contact me on Monday or Tuesday.

I haven’t spoken to the team leader or behavior specialist either. My trust is at a very low point and I’m half expecting this to go exactly like it went with my last several moves: not hearing anything for months until the powers-that-be have found a place they think they can send me to. Staff are saying I’ll have a meeting with the behavior specialist and team leader “shortly”, but they for whatever reason aren’t allowed to tell me when. One staff eventually said it’s on the 16th, but my trust is so low after all the comments that I’m not allowed to know etc., that I’m thinking he may’ve made it up to shut me up.

In the meantime, I am looking at possible new places to transfer to. I don’t want to end up in general psychiatric care again and doubt general homes for people with physical disability, vision impairment or brain injury can cope with my behavior. There are places for people with a combination of impairments, but these aren’t widespread. Like I said last week, staying in this area is no longer a top priority for me, but it’s definitely still on my list of things I hope for.

One thing that scares me, is the fact that I have a long history of being too complicated for one place yet not qualifying for another due to my needs not being (perceived as) significant enough. For example, when I lived independently, I kept being told that I “am not crazy enough” for a psychiatric admission, yet once admitted, I had to lie my way out of the locked unit because the open units couldn’t meet my actual needs. Similarly, I’m quite scared that I’m not severe enough for the complex care units and yet I know for sure that regular care homes won’t meet my needs, in that in those, you either have a physical disability or you have significant mental health or behavioral problems.

There is exactly one home in the entire country, if I’m correct, for people who are both visually impaired and autistic. Then again, I doubt it’s either of those disabilities that causes me the most significant problems. I think, and so did the substitute behavior specialist, that it’s my brain injury. Then again, thinking this creates another catch-22, in that my brain injury was the reason my autism diagnosis was at one point removed, yet I didn’t qualify for an acquired brain injury diagnosis either because I had my brain bleed and hydrocephalus in infancy. That’s how I ended up with borderline and dependent personality disorder diagnoses, neither of which truly explains my actual needs.

I can only hope that, in the nine years since I was kicked out of the psychiatric hospital because no place wanted me, I have accumulated enough evidence for my genuine needs that I can at least get sufficient funding. Then the next step is finding a home that will use the funding to meet my needs.

#WeekendCoffeeShare (July 4, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s nearly 10PM as I start typing this post and I’ll soon need to brush my teeth, but I’ll finish this post before going off to bed. I just had my cup of green tea. If you’d like something to drink either hot or cold, feel free to and let’s chat.

If we were having coffee, first I’d talk about the weather. The heatwave has thankfully ended and we now usually have daytime highs of about 24°C, sometimes even cooler. It’s been quite windy and occasionally rainy too, so I’ve actually even been wearing my jeans again.

If we were having coffee, then I’d tell you that, obviously, I didn’t meet my June monthly challenge goal on my Apple Watch and I didn’t get the perfect month award. So far in July, I’m still meeting my movement goal each day, but I’m not expecting to make it to a perfect month this time either.

I did ride the side-by-side bike to the next town’s market again yesterday. It had been months since I visited the market, but the guy behind the olive stall did recognize me.

If we were having coffee, then I’d tell you all that I celebrated my birthday at the care home on Wednesday. It was a bit difficult. I’d had big plans for baking two cheesecakes and making a pasta bake for the entire home (20 residents). The cheesecakes were a success, but during the pasta bake preparation process, there were some bumps in the road. However, in the end both were delicious! Yes, even the fellow resident who always complains about food being too spicy, loved my pasta arrabbiata bake. I’d made it once before but had then deseeded the peppers. Not this time.

Caramel cheesecake
Pasta bake

If we were having coffee, I’d tell you that I’ve also been quite crafty recently, particularly early in the week. I crafted two small butterflies out of polymer clay (using a mold), to be turned into earrings later. When my one-on-one for the moment saw my other molds, she wanted to use a bigger butterfly mold that I hadn’t used in years. She proposed to use multiple colors in a marbling technique and chose eight all very different colors, including both yellow and purple. I know a little about color theory and said yellow mixed with purple becomes a horrible brownish color. My staff said that, if the butterfly turned brownish, she’d take it home and display it on her fridge. I ended up giving it to her regardless, but it didn’t turn ugly! I do take the credit for being careful not to overmix the colors, though in hindsight I might’ve undermixed them for the effect she wanted.

Polymer clay butterfly

If we were having coffee, I’d share that this crafty endeavor made me decide to order several other small earring molds. My sister had gifted me a voucher for one of my favorite clay supplies shops and I spent it on molds, cutters and also two new colors of acrylic paint. One of the paints was named sorbet and I had absolutely no idea what color that’s supposed to be. I now realize I could’ve had AI describe the image on the website, but I ordered the color and only discovered that it’s a kind of pink once it arrived.

If we were having coffee, I’d finally share that specialized client support contacted the behavior specialist and they’re now going to get back to me. When I found out they wanted to talk to the behavior specialist, I feared my care agency was going to hijack the entire process. I’m still not convinced that they aren’t, particularly since finding out yesterday that the team leader had informed the staff that I’m leaving before I’d even gotten a clear idea of the consequences of the meeting with the substitute behavior specialist in which she’d posed the question whether I’m in the right place here. It doesn’t help that staff are making all kinds of assumptions about what kind of place would be better suited to me and what I find most important. The truth is, my main requirement is that a future placement’s team, including higher-ups, truly wants to understand and accommodate my needs. I don’t want to have to move again in two or three years.

Every Move Counts!

Posted on by Astrid
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Hit 5,000 steps today and drop your achievement here — we’re cheering you on!
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I have had an Apple Watch for nearly four years. Its movement goals are based on calories burned while being physically active rather than steps. It doesn’t even automatically display your step count. I just checked the Health app on my iPhone and my step count on there is nearly 7,000 at 7:30PM.

Because I get most of my physical exercise through walking, I can safely assume that a day’s step count at least correlates to my level of physical activity for the day. That is, unless I rode the side-by-side bike to the next town or even farther.

My calorie goal on my Apple Watch is 300. This goal is fairly easy to reach if I go for at least one walk. Even if I don’t walk, I can still reach it by dancing for about 20 minutes. The only times I didn’t reach my movement goal, were times when I wasn’t physically active at all, like during last week’s heatwave.

That being said, level of physical activity alone doesn’t determine health benefits. Effort does too. People who use a wheelchair full-time can still experience some health benefits of physical activity when they challenge themselves beyond their comfort zone. At least, this applies to brain health benefits. For metabolic health, actual movement is required. But not necessarily steps.

I honestly believe that I, even though I regularly hit those elusive 10K steps, experience fewer health benefits from my physical exercise than many who get in fewer steps. I mean, like I said, most of my physical activity involves walking. I should really incorporate more varied exercise into my routine. I do try to challenge myself physically even though this is in ways non-disabled people wouldn’t consider challenging. This way, I hope to keep my mind as sharp as possible.

June 2026 In Review

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means it’s time for my monthly review. June, overall, was quite an eventful month. It had its low lows, but thankfully it also had its ups.

I started the month with a few meetings with the substitute behavior specialist. She had opened quite the can of worms by asking me whether I’m at the right place here. Initially, I didn’t see it as a negative that she was questioning this, as she at the time worded it in such a way as to indicate there might be a better, more suitable place for me. Now, nearly a month on, I’m trying to hold on to this belief but the thought is creeping up onto me that the powers-that-be want me gone as soon as possible.

The reason I believe this, in part, is the fact that, to the staff, it appears the fact that I’m moving is a given. I hadn’t interpreted the substitute behavior specialist’s comments like this, but now that they’re all talking in terms of my “having to” move, the whole thing scares me. I’ve made it clear that I don’t want to be shoved around like a parcel, but some staff are already asking me whether I’d be okay with being transferred to a place that would be temporary again. Well, no. If (and I deliberately say “if”) I move again, it’ll be to a place in which I can stay and grow old.

Other happenings this month included the meeting with the client confidante on involuntary care. This meeting was attended by my assigned staff and the regular behavior specialist. I’m rather skeptical about the whole thing, among other things because the behavior specialist is adamant that the door between the two sides of the home needs to be locked “for peace and quiet”. Unfortunately, the staff aren’t able to accept the reality that, if the door is locked for us, it means there’s no way staff can be having their breaks on the other side of the home without the continuity of care being disrupted. It looks like the staff are far from realizing that this is our home first and only their workplace after that. I doubt with my being at least coerced into moving, I’ll have the time to cause an attitude shift here.

I also had my birthday this month, of course. I turned 40. Since I’d cut off contact with my parents earlier in the week, they didn’t visit. My sister and her family did. I got a gift card for one of my favorite online polymer clay supplies shops. Yesterday, I spent it on molds, cutters and paint. I can’t wait for the package to arrive.

I also celebrated my birthday with my best friend. Haven’t opened the package of polymer clay I got from her yet, but probably will soon. Tomorrow, I’ll be celebrating my birthday at the home. It was quite stressful to get all the ingredients for the caramel cheesecake delivered. I also couldn’t fully follow the recipe, as I’d initially wanted to make three cakes, then did two and well let’s just hope it isn’t one major fail. The cakes are now setting in the fridge.

My wife/best friend and I, like I said in my coffee share posts, are almost done with the divorce too. The signing session with the mediator did bring up some emotions for me, as did the video call with the lawyer, even though it in itself was a breeze. I’m still struggling with all the big issues that came up when I decided I certainly don’t want my parents or sister to make medical decisions for me should I become incapacitated, as they’ll automatically be asked to after the divorce if I don’t appoint someone else (like my best friend) myself.

I still haven’t been as involved with meaningful activities as I’d have liked, but I did cook several times and crafted a few things out of polymer clay. I also created bracelets for my nieces, but they were too small. The younger niece got the bracelet originally meant for her sister and I created a new one for the older one. She’ll have to wait until my sister visits again though. So will my sister, as I had bought a book for her but forgot to give it to her when she visited.

Speaking of books, I haven’t been reading much because my Braille display is acting up and I don’t want to damage it further in this heat. However, my best friend suggested I give audiobooks a try and so I did. I just finished a Dutch collection of stories from a medical examiner. This was a challenge I took up that ended up proving to be positive.

I also gave starting an Open University course some more thought. I know I said last year that I wanted to start and never did, but honestly what’s the worst that could happen if I do sign up? I could fail and that’d mean my money would be wasted. Not even entirely, as the difference between a failing grade and a passing grade is a certificate I won’t ever be using anyway. I mean, it’s not like I’ll need to complete a course for a job or anything. It’s currently the end of the academic year, so I’m considering starting in September.

Lastly, I actually wrote this post in the block editor again. Not that I can find any information on the discontinuation of the classic editor, but I’m just challenging myself. I know this post doesn’t contain any images, but I figured out that the images in my last post were indeed fine and I was once again worrying for nothing. I just saw that the error I got when running my images through my screen reader’s image description tool, occurs on many other blogs, even photography blogs. Now I’m relieved!

Crafting Lately: A Unicorn and Another “Cheer Up Frog”

Posted on by Astrid

Hi everyone. It’s nearly 11PM as I type this and I originally didn’t intend on writing a blog post today. Then, however, I learned that WordPress is intending on phasing out the classic editor (thanks Di for the heads-up) I almost exclusively use the classic editor, so I’m, well, quite a bit upset. Now I’m having to learn not only to write blog posts without using my Braille display, but also in the dreaded block editor. I could turn this into a challenge though and see what I can still do. For this reason, I’m writing a post in the block editor. And to make it extra challenging, I’m writing a crafty post, so that I’ll have to include images.

In truth, I haven’t been all that crafty lately. However, last week, a new staff was being oriented to me. The regular staff accompanying her is a great crafter, so I made use of this fact and decided to do polymer clay again. I started out making a unicorn. It’s the same style I usually use, but I did get compliments on the color combination, which I chose. The body is done using Fimo Soft in the color pastel vanilla and the horn, mane and tail are done using Fimo soft in the color pastel peach. The unicorn has a decorative flower on its side in the color pastel light pink, but I don’t think the picture captures it.

This unicorn, I did mostly with help from the regular staff while the new one was watching. Then, I made another little sculpture together with the new staff. I wasn’t too inspired, so chose the “cheer up frog”. For those who don’t know, I make frog figures for people who need a little cheering because they’re on sick leave or for another reason could use a little reminder of the good things in life. The Dutch word for “cheer up” is derived from the Dutch word for “frog”.

I added a decorative clover figure to its belly, but in hindsight could’ve gone with a larger size. My best friend also commented that the standard tropical green gets a little boring. One thing I did to challenge myself is to add seed beads to the eyes rather than my standard black dots.

I thoroughly enjoyed working with polymer clay. However, now that I’m sharing these on the blog, I’m struggling to put the blocks in the right order. Ugh, this is definitely a learning curve! And now it’s past midnight, so I’ll have to figure out whether I want to publish this post on Monday or change the publication date. And by the way, it looks like the images are somehow hidden behind my text. This definitely sucks!

#WeekendCoffeeShare (June 27, 2026)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s nearly 10PM, so no more coffee for me. I will probably take a break from writing this post (or maybe two) to have a drink of water though. It’s my birthday, but I’m not celebrating it at the care home until Wednesday. My best friend did bake me a nice vegan cheesecake though. No pictures, unfortunately, but it was good even though she said she’d forgotten the added sugar. Grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. We’re in an extreme heatwave right now. I have hardly been outside since Tuesday because daytime temperatures literally reached over 35°C. The nighttime temp didn’t get below 22°C last night either. The humidity makes it even worse. We’ve had a heat index of 10 out of 10 for the past few days. It’s June, for goodness’ sake!

If we were having coffee, then I’d tell you that I obviously didn’t meet my movement goal on my Apple Watch most days this week. I haven’t been for walks since Tuesday and, since the heat indoors is unbearable too, I can’t dance either.

If we were having coffee, then I’d moan about my Braille display. It’s got lagging dots again. That’s not the worst, honestly. The worst is the fact that, due to the fact that I’m quite sweaty from the heat, I can’t use my Braille display at all or it’ll for sure get moist damage. I’m trying to type this post using JAWS (my screen reader) with just speech now. Being that I was a Braille-only user for the first 20 years that I had access to a computer with a screen reader, this is quite a challenge.

If we were having coffee, next I’d update you all on the divorce. As it turned out, the two of us signing the paperwork wasn’t the last step in the process. Sure we’d been told, but both of us had forgotten. We each still had to have a video call with the lawyer who’d write the request toe the judge. This was last Thursday and it was easy-peasy. I’d expected to be challenged on some of the details in the agreement that are formally to my disadvantage, but he just asked me to confirm that I agreed to them. The divorce has now been submitted to the judge for approval. This will likely be a piece of cake too, so with all going as planned, we should officially be divorced by early August at the latest.

If we were having coffee, I’d tell you that my parents, particularly my mother, didn’t take it well. This among other things has caused me to cut off contact with my parents earlier this week. My sister probably knows even though I didn’t tell her, but she’s so far treating me respectfully.

If we were having coffee, I’d then share about my birthday. It’s my 40th and I’d been looking forward to it for a while, but the situation with my parents causes me to feel a bit bummed about it. I spent the day with my best friend. She gave me some lovely gifts. First was a package of polymer clay in colors none of which I had so far. Half are from the Botanical range and I’d been aahing over those for months. The other gift was a mug. I’d already gotten a 40th birthday mug from my home (well, I’ll ultimately pay for it myself, but the others don’t know that). The one I got from my best friend is much better though.

I’ll celebrate my birthday at the home on Wednesday. I will then get the rest of my gifts, but wanted the birthday-theemd ones in advance because my sister and her family were here last week. They gave me a squishy ball and a doll that my nieces probably selected. Today, my sister also sent me a gift card for one of my favorite clay supplies shops.

When I celebrate my birthday here at the care home, I’m going to bake a caramel cheesecake or probably two. I’ll also cook a pasta bake for everyone (both sides of the home). Hopefully it’ll be less hot by then.

Emotionally Immature

Posted on by Astrid

Hi everyone. Yesterday I listened to the most recent episode of the I Have ADHD podcast. It was on parenting and specifically on how to raise an emotionally mature child.

The concept of emotional immaturity as the problem behind many challenges parents and their adult children face, was first populated by Lindsay C. Gibson. She was a guest on the podcast episode too. However, emotional development as its own thing isn’t just her idea. As regular readers of my blog know, I occasionally write about how it relates to challenging behavior as seen in individuals with intellectual or developmental disabilities. The person behind this theory also focused heavily on coregulation (though I’m not sure he used this word yet) as a means of allowing individuals with disabilities to grow emotionally. So does Gibson.

In her latest book, which is geared towards parents, Gibson has a chapter on things not to do when raising a child. I haven’t read the book, but in the podcast she mentioned hitting as an example. Oh my, did it hit home (no pun intended)! Gibson explains how tempting it can be to spank your young child, but goes on to say that if you set this precedent, what will you do when the kid is fourteen or sixteen? What will they do, I wonder. My mother used as an excuse for smacking me in the head and worse that I was fifteen, not three. I’m pretty sure she did spank me when I was three too as that’s what parents did back in my day. That’s not an excuse though.

Another example Gibson gives is never to invalidate your child’s feelings. This is an extremely hard one, honestly. I mean, on a daily basis when I express my insecurity, I hear my staff respond with things along the lines of “There’s nothing to be scared of”. Well, so you think, but you’re not in my head and my body.

It’s unfortunately worse with my parents. Last Sunday, I had a lengthy text conversation with my mother, because she demanded to know why I don’t feel safe meeting my parents without my best friend. I didn’t give her the explanation she wanted, because I know that’d lead to further invalidation. Rather, I set a boundary that I won’t be meeting her and my father without my best friend present, period. Let’s just say that, after a lot more harsh words towards me and my best friend, I decided to cut off contact.

I did take away from the podcast episode that I’m myself also very emotionally immature. Not that I didn’t know this already, as I’ve explained multiple times when discussing emotional development before. However, a positive takeaway was the fact that self-reflection can help us grow emotionally if we’re genuinely curious about ourselves and others. With my parents, this ship has sailed. I’m also childfree, so no need to worry about continuing the cycle with my own kids, but I do believe that curiosity and self-reflection help any relationship.

Missing Mommy #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for Stream of Consciousness Saturday is “miss”. I immediately thought of the fact that I miss my mother. No, scratch that: I miss Mommy. I miss a mother I honestly never had.

When I was little, my mother did try to stand up for me to my father, who’d been adamant that if I didn’t meet his expectations for me, I wasn’t worth raising. Not even worthy of life. As regular readers of my blog know, my father asked the doctor when I was an infant in the NICU whether I should still be treated aggressively given my possible future quality of life. The doctor was adamant that they were keeping me alive no matter what.

As I get older, accept more care and show more and more that I’m unable (and unwilling!) to conform to my parents’ rigid ideas of a person with a life worth living, I find that my mother is the one most vocal about the fact that she’d rather die than than live like this. And by she, she means me.

Nonetheless, I can’t keep from texting my mother. I honestly wish I could full on go no contact, but that’d be extremely hard if not impossible. I’m working on making sure that at least she will never be appointed to be my medical power of attorney. I am thinking hard about the difficult choices should I actually deteriorate to the point of no longer being able to make my own decisions. The first step, after all, is making those wishes clear.

However, all this doesn’t keep me from missing Mommy. That is, missing a mother who unconditionally loves me whether I’m disabled, queer, neither or as in my case both.

Not Dead Yet

Posted on by Astrid

“Not dead yet.” That phrase has been on my mind almost constantly for the past few days. It’s the name and/or slogan for a disability rights organization most specifically focused on campaigning against the “death with dignity” lobby.

Though I am 100% in support of every individual’s right to die when and how they want, the key here is “individual”. This means no-one should be pressured into dying either by family members or relatives, doctors or the government. This is why the phrase resonates with me.

My best friend and I are now almost officially divorced. I say “almost” because we’ll still separately have to talk to a lawyer via a video call next week. I however already updated my Facebook status and told my parents. This may’ve been a mistake less than two weeks before my birthday, but I can’t undo it now.

My parents are saying they’re worried I’ll end up lonely in the institution. No amount of me telling them nothing’s changed about the relationship with my best friend, convinces them otherwise. They’ve actually invited me (and explicitly just me, without my best friend) for dinner at a local-to-me restaurant on my birthday. Too bad I’ll already be meeting my best friend.

That’s not the worst though. The worst are all the comments my mother made on the phone about how she’d rather die than live like this, how hard it is for her to see relatives in care facilities, how I’ve only deteriorated over the past 20 years, etc. She herself claims she’s already made plans of ending her life in the event my father passes before her. I respect that choice, because like I said I’m all for the right to die. But it has to be a right. The way my mother spoke, it made me feel pressured to end my own life.

As poor as my quality of life is at times, I’d still like to be the one making the decision whether it’s so unbearable without a prospect of improvement that I’d rather be dead. I don’t need my parents’ opinion on that. And at this point, I’m choosing to stay alive whether my parents like it or not.