A Gratitude Letter to My Paternal Grandfather

Posted on by Astrid

Hi everyone. I really want to write more and also to cherish the positives in my life, both past and present. For this reason, I opened the Gratitude app on my iPhone and had the journal feature give me a prompt. It was to write a gratitude letter to one of my grandparents. I have shared quite a few times how my paternal grandmother positively impacted my life. I could write her a gratitude letter and I may do so later on, but for today, I’m choosing to write one to my paternal grandfather.

Dear Theo

It’s been over 23 years since you passed. If there’s an afterlife, I hope there’s a way for the divine to get this letter to you. If there isn’t, I know you’ll never read this, but it helps me personally to express my gratitude for you. I think you may not have noticed it, especially since your dementia was already advanced by the time it was diagnosed, but I felt deeply touched by you even during the last few years of your life.

Your eldest son, my father, may not appreciate this about you, but I realize I got my health-conscious mind from you. I mean, it didn’t always look good on you and my parents don’t like it in me either. You were worried about cognitive and physical decline for as long as I remember. My father thought you were an nagger. I see you had a zest for life that was maybe hidden beneath anxiety.

You also taught me to listen to my body. Not that I can do it well, but at least I’m not the one to decide I’d rather die than go see a doctor.

Of course, I didn’t know you when you were young. You were 61 when I was born. As such, I don’t know whether your zest-for-life-turned-to-anxiety was always there. My father doesn’t have it (yet), at least not the anxiety part. I do. Having seen my parents’ attitude towards you and now towards me, gives me the will to be conscious of what I want in life, including at the end of it. You never had that choice. Then again, I hope you didn’t experience decline when you were my age.

Lastly, I want to thank you for the apparently insignificant details of your visits. You know, the coins worth five guilders you gave me and my sister at the end of each visit. Once, you put them in a transparent container that was screwed tight and that we couldn’t open independently. I remember it frustrated me to no end, because I wanted my coin, for goodness’ sake. However, now that I’m an adult, this is one of my cherished memories of you.

With love, Astrid

#WeekendCoffeeShare (July 17, 2026)

Posted on by Astrid

Hi all! I’m joining #WeekendCoffeeShare once again. It’s now 7:30PM, so I’ve had my last cup of coffee for the day. I need to take a shower in about half an hour, so will let my post sit for a bit then and return after I’ve had my medication and evening soft drink. 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. We were supposed to get another heatwave here this week. Thankfully, it wasn’t that bad, but only barely so. It’s incredibly dry though. Here’s hoping for rainy weather soon.

If we were having coffee, next I’d tell you I won’t be having a perfect month with respect to my movement goal on my Apple Watch. It’s not necessarily because of the weather. Rather, last week Wednesday, I stubbed my toe and it led to a small fracture. The staff who was here when it happened (in fact, I stubbed my toe on his shoe) initially thought it was just bruised. Unfortunately, I took this to mean I shouldn’t be nagging even though the next day and the next and over the weekend, my toe hurt like crazy. I ignored the pain and kept walking. Then on Sunday, the pain was so bad that I could barely walk outside at all, so the staff who was with me at the time, said we should ring the GP on Monday. The GP’s nurse practitioner came by on Tuesday and said I probably suffered a small fracture indeed. Since it’s my little toe, nothing can be done, but she did give me naproxen for pain relief. It’ll likely take several weeks for my toe to fully heal, but next week, hopefully I’ll be able to get by with just paracetamol.

If we were having coffee, then I’d share that I had a meeting with the behavior specialist, team leader, my assigned staff and support coordinator yesterday about the moving plans. It turns out they have no plans of actually kicking me out against my will. They just believe, like the substitute behavior specialist said about a month ago, that a place for people with brain injury may be more suitable for me. Whether finding me a suitable place is possible given my current care profile and the extra support hours etc., will have to be determined. It’s all quite scary, but I’m not as scared as I was before I had this meeting.

If we were having coffee, I’d tell you I also had a meeting with the intellectual disability physician on Monday. I went down another 1mg of my antipsychotic. I’m now on 6mg of aripiprazole. I can’t believe I was at one point, for many years in fact, taking 30mg.

We also discussed my getting access to my medical records. Thankfully, she gave me permission. The GP will have to sign me into the system though.

If we were having coffee, I’d share that I didn’t cook last Saturday or Wednesday, but I did make another batch of granola on Wednesday. The reason I didn’t cook is the fact that I reasoned it’d be too hard for me given the stress of the two meetings I had. All this being said, I did help with preparing my own lunch by cutting up the vegetables I usually have as a side a few times. This was a good experience.

If we were having coffee, I’d share I did engage in a few creative activities over the past week. One involved making polymer clay earrings. The finished project didn’t satisfy me, but the process was fun.

I also created another unicorn-themed chalk pastel drawing. Can’t remember whether I shared this before, but one of the staff is incredibly creative and she at one point came up with this idea. I used a template for drawing the unicorn and of course I know my six-year-old niece can probably do it better than I can, but who cares? I’m more and more appreciating the fact that I can do something rather than focusing on what I can’t compared to non-disabled people.

This brings me to another creative adventure: photography. I’m hoping to soon take more pictures and to actually share them on the blog. I in fact subscribed to a few blogs that have photo prompts and am liking them a lot. I really would like to expand my creative horizons.

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
Daily writing prompt
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.