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”.

Am I a Monster?

Posted on by Astrid

Hi everyone. I’ve been struggling really badly once again. Nearly three weeks ago, I had an outburst that caused the second staff so far at this home to request to the team manager that she not be required to support me for a while. This staff used to be one of my three assigned staff. Another was a student and has since left this home to continue her education at the intensive support home I used to live at. The third one is still my assigned staff, but she only works a day or two a week.

With the staff who previously requested to not support me for a while, I’ve since talked things over, though she still refuses to be honest about the thing that got me to be angry with her, ie. her using literally every opportunity to assign me a temp worker. Because of this, I’ve felt like I had to apologize for my anger (which I see is necessary) but she wouldn’t have to apologize for or explain her behavior that upset me. With the current staff, I don’t have this issue, but I do mistrust her for having pretended to have talked it over then decided she couldn’t handle it anymore a few days later.

I realize part of the problem is my attachment anxiety. As a result of this, I mistrust people who try to come close and be there for me, because I know that if they truly knew me, they’d reject me. Which is, of course, true in theory at least: no-one in life is there for anyone else unconditionally. And, given that I sometimes don’t know who I truly am, I worry that I’ll be worse than even I can imagine if I let my guard down.

Of course, it’s also a self-fulfilling prophecy, as you can see from the fact that two staff in the past year have already rejected me. The current one even claimed she wouldn’t.

Even if I’m in the midst of severe self-doubt, I am (almost) certain that I won’t become physically violent if I let my guard down. The problem is that words hurt too, and I can unfortunately say quite nasty things even without meaning them. I mean, there’s been one instance, back at the intensive support home, when I hurt someone’s feelings with a literal personal attack: I said that it was her fault that she got hurt during a fellow client’s outburst. This staff never requested to not support me anymore. With the two who so far did here, my comments weren’t intended as they came across and, while they could literally be seen as hurtful, I didn’t mean them personally and had no bad intentions whatsoever.

I struggle intensely with this knowledge, that I don’t intend to hurt people but that I do it nonetheless. I also struggle to figure out a way to stop this. After all, they are not insults that caused these staff to reject me (though I called them both bad names too). If they were the insults, it’d be doable to erase these from my vocabulary, as I’ve mostly successfully done with certain other words. However, like I said, they were their interpretations of my comments about how they don’t know me that hurt their feelings. This is harder for me to process, as it means being aware of every possible interpretation of something I literally say. This is quite hard for me as an autistic person with virtually no cognitive empathy.

Besides, as I now realize, I probably have low emotional empathy too, as I wasn’t able to predict that the staff was just going through the motions when I thought we’d talked things over. She in fact supported me through an intense movement therapy session and I didn’t pick on her struggling at all. This makes me feel even worse than the fact that I didn’t realize at the time that my words were hurtful.

This low emotional empathy realization makes me feel like I’m a monster. Aren’t autistics supposed to have high emotional empathy? Aren’t psychopaths and narcissists the ones with low emotional empahty? I mentioned possibly being a narcissist to my wife and she denied I am. Then again, aren’t narcissists masters at making their loved ones believe they are the victim? Is all this my attachment anxiety talking, or is there some truth to the idea that I don’t deserve to be supported?

September 2025 In My Kitchen

Posted on by Astrid

Hi everyone. It’s the last day of the month and I’m joining in with the In My Kitchen linky once again. Last month, I said I had a few plans for the first week of September and hoped the rest of the month would be active as far as cooking and baking went too. Well, it wasn’t really, but in addition to there still not being any clarity on when I can actually do a cooking/baking activity, it didn’t help that I was sick with probable COVID for most of the second half of the month. Anyway, let me share what I did accomplish.

First, on September 2, I cooked a pasta dish for this side of the home. I used roasted bell peppers, mushrooms, onions, garlic and chicken. I bought the roasted bell peppers in a pot, but later found out it’s relatively doable to make them yourself.

Then, later in the week, I made another bowl of overnight oats for myself. In the picture, you can see my special spoon. I usually don’t take pictures of my adaptive cutlery or other special tools, but actually why not?

Too bad I don’t think of creating simple breakfasts or lunches for myself more often, as I really wish I could contribute to my wellbeing that way. However, I also blame the day schedule, because I have “alone time” for thirty minutes before lunchtime and I cannot prepare food completely without help.

The next Saturday, September 6, I used my two-hour activity time slot in the afternoon to bake Biscoff blondies. My baking tray was a little larger than the recipe creator recommended, but the blondies turned out great regardless. Most of my fellow residents and staff had one with their evening coffee.


They were delicious but very filling. When, the next day, my spouse and I had two of them, neither of us cared for lunch even though I am usually almost insatiable.

The next week, I didn’t do anything in the kitchen. On the 18th, however, I celebrated two years at this care home, so I wanted to cook dinner again. That day, there was also the institution festival, so I decided to do the cooking on Wednesday the 17th. I made burgers for the entire home, both sides, so 20 residents plus staff.

Unfortunately, the home was short-staffed that day, so I initially offered to eat in the living room as to not need a one-on-one staff in my room. By this time, my respiratory symptoms were getting noticeable and I was easily overloaded. I managed to snap a picture of my plate when in the living room, but quickly decided to go back to my room.

Once in my room, I discovered the staff who I’d asked to do the final work, had forgotten to add the onions, bell peppers and mayo to my burgers. Thankfully, this got sorted and I took another picture of my burgers before consuming them.

The burgers, unfortunately, weren’t as good as I’d planned them to be. I mean, they couldn’t have been all that great, as they were freezer burgers, but I had totally wanted the dish to be more appealing.

Overall, the first half of the month was pretty fulfilling in the kitchen department, but the second half wasn’t. I’m hoping that, now that I’m almost over this respiratory bug, I can start preparing food again. Today, I did get a breakfast box full of yummy things in it to be used on Saturday, when I do the Walk on Sunshine for the Dutch cerebral palsy charity.

#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.

Laughing Over Lemons

Posted on by Astrid

Laughing over lemons. That phrase has been on my mind for a few days. It’s a twist on the phrase “When life hands you lemons, make lemonade.” I think sometimes it’s best to laugh at our worst days.

Like, when I had only been in the psychiatric hospital for a day back in 2007, I was telling psych ward jokes. You know, what’s the difference between the patients and the staff on psychiatric units? First, the patients get better and leave. Second, the staff have the keys. And there was another one. Something about not all patients believing they’re God. I think those last two apply to institutions for people with developmental disabilities too. I mean, particularly at the intensive support home (ie. the home for those with severe challenging behavior), my spouse said the only noticeable difference between the residents and staff was the staff carrying a pager to beep for assistance when a resident becomes violent. Other than that, both staff and residents were usually staring blankly at the TV.

We, the residents, were often blamed. Or at least, the other residents (other than me, that is) were. They have no motivation for life and they are too old to teach. Besides, no-one can force them away from the TV because that would be involuntary care. That’s what I was told. Never mind that I’ve witnessed on many occasions staff telling residents that they had gotten enough “attention” for the day because staff had been sitting with them for fifteen minutes with a cup of coffee.

I am often quite cynical in my humor. If only my cynical jokes weren’t actually 99% truthful. And now all I can hope for is that my joke about everything being okay in 2034 (because the world is going to be blasst to hell) isn’t going to turn out 99% truthful too.

I am linking this post up with Friday Writings. It isn’t necessarily a hopeful or positive post. However, I do feel that laughing over the many lemons life hands me and many other people in this world and age, can certainly be helpful.

Gratitude List (August 24, 2025) #TToT

Posted on by Astrid

Hi everyone. It’s been a while since I last joined Ten Things of Thankful (#TToT), but today, I feel like it. Here are my gratefuls for the past week.

1. Baking a cake. Earlier this week, I decided to use up the second of three cake mixes I’d gotten from my parents for my birthday. It was raspberry cake. Unfortunately, I found out today that the third mix had an expiration date in April, so I threw it away. Now I do think the other mixes probably had their expiration dates at the same time, as they came in one package, but oh well.

2. A long bike ride. On Wednesday, the staff and I rode the side-by-side bike to the nearby town to get groceries, only for me to realize then that I didn’t know what groceries I’d wanted to buy, so we decided to just bike around. It turned out I’ve broken my record for the longest bike ride at 19.3km.

3. The night staff. I’ve been needing their support a few times lately and often feel like a burden. The night staff used to make that feeling worse by telling me to “just try to sleep”. Thankfully, recently they’re telling me that I am not a burden and they’re there for me as much as they are there for everyone else. Even if they don’t fully mean this, it helps me feel more comfortable.

4. The staff having cooked chicken and noodles for us on Wednesday.

5. An institution cafeteria sandwich on Thursday.

6. Green tea. Always, green tea. I’ve been requesting it in the evening more often lately and that’s been feeling good.

7. My having been allowed to play DJ again with the home’s large Bluetooth speaker. I mostly played ABBA songs, but did one MARINA song too, realizing only when it’d started that it was rather explicit. Oh well, most of the residents don’t know English and the few who do, just chuckled at it.

8. Mini candy bars. A fellow resident’s parents brought them yesterday and they are yum! I only found out that they were from Aldi today. If I’d known earlier, I’d have asked my spouse to drive by there on the way from Apeldoorn to the institution so that I could pick up a bag myself.

9. Diarium, a diary app. Recently, there was a discussion on Reddit about journaling and I decided to give this app, which is available on both Windows and iOS, another try. It has a lot fewer features than Day One, but Day One’s web-based interface (there’s no PC app) honestly sucks.

10. The weather. We’ve been having lower temps this week than last week and I’ve had to wear my jeans again and even put on a jacket some of the time. Still, it’s been warm and sunny enough.

#WeekendCoffeeShare (August 15, 2025)

Posted on by Astrid

Hi everyone on this warm Friday evening. I’m joining #WeekendCoffeeShare. I usually do mine on Saturday, but I’m motivated to write now so let’s make use of it. I just had my evening soft drink and a single-serving bag of chips. I’d recommend you’d grab something to drink if you were here. Let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been hot all week. In fact, I’m pretty sure we have a local heatwave, meaning five days in a row of daytime temps above 25°C, of which three with daytime temps of 30°C or above. I haven’t checked the news in months and don’t want to check it now, but I don’t think it’s a national heatwave.

If we were having coffee, then I’d share that, thanks to the nice weather, I was able to eat outside three or four times this past week. Did I share my spouse gifted me a new outside table, because I’d broken the one I’d gotten last year? My spouse had ordered it online and had had it delivered to the institution. We hadn’t seen each other since, so yesterday after a lot of pestering, I decided to snap a picture. I rarely take pictures fully independently, so if this one’s unclear, I apologize.

If we were having coffee, then I’d tell you I’m still going strong with my movement and exercise goals on my Apple Watch. On Saturday, I did in fact break my active calorie record. Yesterday, I broke a record with the longest bike ride. My Apple Watch also said I burned the most calories during a cycling workout, but I doubt that’s true.

If we were having coffee, next I’d announce my participation in the Walk on Sunshine on October 4. It’s a walk to raise money for the Dutch cerebral palsy charity CPNederland. The goal is to walk at sunrise. Sunrise is at 7:45AM that day and the staff usually don’t get here until 7:30, but one of the staff agreed to come here early and do the walk with me. I signed up for the 5km walk, because that’s a challenge for me particularly in the morning, but not impossible.

If we were having coffee, lastly I’d tell you all that I’m still struggling. I experience a ton of trust issues towards my staff and am not sure these are entirely unfounded. Like, today my spouse and I were on the phone during my entire late afternoon activity and, though it was nice to talk to my spouse, I worried that the staff are going to cut my care hours because of it. After all, for some time they tried to make my spouse visit me each Sunday so that they could cut my hours.

Honestly, I think I’d be much more independent if I knew that, when I have a bad day or a bad moment, I can always get some extra support. In this sense, my psychologist back in the mental hospital was right that anxiety is part of the reason for my dependence. However, her subsequent actions to “treat” me, ie. kicking me out of the hospital into independent living with minimal support, actually worsened my situation. So did my staff’s decision back last year about my having to compensate for every moment I needed extra support due to distress. These and other strategies, while intended to encourage self-reliance, actually achieved the very opposite. After all, my abilities fluctuate and my mental state doesn’t adhere to a day schedule, so that I’m only in distress when I have one-on-one. No, I don’t purposefully work myself up in order to get more support, but my mistrust of my staff’s continued actual support does lead to distress.

#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.

#WeekendCoffeeShare (August 2, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare. It’s almost 10:30PM, so no more drinks other than water for me. That green tea I got a month ago has gotten a meaning of its own lately, symbolizing my lack of independence and self-determination. But I’m getting ahead of myself. Grab yourself a favorite drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been rainy most of the week and honestly less warm than I’d like it to be. I refuse to wear long-sleeved shirts in the middle of summer, but today, I almost regretted going out in just a T-shirt.

If we were having coffee, I’d tell you that in part due to the weather, I haven’t been as physically active as I’d have liked lately. Today, my spouse and I wanted to go for a walk but it was raining pretty hard so we turned around within five minutes. That was when I was out in just a shirt. I’m hoping I can still meet my movement goal on my Apple Watch today.

If we were having coffee, then I’d share that I was at our house today. My spouse got a new cat about six weeks ago and I hadn’t met him yet. His name is Caleb. Unfortunately, he hid under our bed as soon as I walked in the door and had to be dragged down by my spouse for me to be able to pet him.

We originally intended to cook dinner together or get pizza delivered, but since the weather didn’t permit us taking a walk and my spouse didn’t want to stay inside the house all day, we decided to drive to Apeldoorn. I needed a new jacket, after all. My old one, I’d bought seven years ago and it’d finally gotten damaged beyond repair in addition to being quite dirty. When my spouse asked me my size, I made a guess. It turned out the old jacket was several sizes bigger. Then again, back in 2018 I was at least 10kg heavier than I am now. I finally got a jacket with a size inbetween my original guess and the old one’s and it fits perfectly.

If we were having coffee, then I’d tell you that, as of yesterday, I’m once again a tiny step down with my medication. Specifically, I’m now on the absolute lowest dose of pregabalin. I was never on a high dose anyway, in fact having been on my start dose for years, but as it is in medicine, apparently going up is easier than going down. Six weeks from now, I’ll most likely be completely off of pregabalin.

If we were having coffee, then I’d share I’m still struggling. Part of it is the realization that my life is far from “normal” and the fact that I feel guilty about not accepting this reality. I constantly have my last home’s staff’s words in my head about never having a perfect day. I am also constantly thinking of ways in which my life could be even a tiny bit more meaningful.

If we were having coffee, finally I’d share that I did have some good moments over the past week. Like I said on Thursday, I have been quite active in the kitchen. I also on Thursday crafted another clay parrot.

The staff who’s leaving, took this one and the one we made last week home with her yesterday.

Tomorrow, one of my assigned staff is going to do my morning activity with me and we agreed to work with clay again. I have yet to think of some ideas for what to make. She wanted an elephant, but I’m not yet sure how to go about doing that.