Share Your World (March 3, 2025)

Posted on by Astrid

Hi everyone. Today, I’m joining in with Share Your World. I love the gratitude section at the bottom of Di’s original post. In fact, I may use it as a jumping point for another post later. For now though, let’s move on to Di’s questions.

1. Which of the following could you NOT do without?
Automatic washing machine, TV/cable, Microwave oven.
I don’t need any of these just for myself and don’t personally use any, although we have all three in the home. If I had to choose which of these to keep in my care home, it’d be the automatic washing machine. Not because I have to do my own laundry, but because the staff are busy enough with it now that they don’t have to do it by hand.

Life without a TV would be so relaxing, as the TV is blaring all day long in the living room that’s adjacent to my room and with the TV directly attached to the shared wall.

2. Which would be your priority of these:
a warm coat or a comfortable pair of shoes.
Comfortable pair of shoes. Simply because, without the right shoes, I just can’t be outside because it’d mean constantly falling.

3. Would you rather have a hot cup of tea/coffee or hot soup?
Hot coffee all the way! I don’t like the feel of soup in my mouth.

4. If you had the choice rather than necessity/cost effectiveness, would you rather rent a property, buy with a mortgage, or share with family/friends and split the cost?
I have no idea. My spouse and I currently own a house (with a mortgage) and it’s stressful with all that we have to do by ourselves (that is, just my spouse) in terms of renovations.

Then again, our rented house was stressful because we were dependent on the housing corporation. In fact, I’ve had more stressful situations with them than I’d like to share.

Sharing with family/friends would also be quite stressful though, as I can’t get along with my parents or sister.

Let’s just end this by saying I’d stay where I am.

#WeekendCoffeeShare (March 1, 2025)

Posted on by Astrid

Hi everyone on this first day of March. I’m joining #WeekendCoffeeShare again. I’ve just had my last cup of coffee for the day, but if you’re quick, you may be able to enjoy a soft drink. We usually get chips with our soft drinks on weekends, but if I’m correct, the staff ordered meatballs. Let’s have a drink (and a snack) and let’s catch up.

If we were having coffee, first I’d talk about the weather. Most days, it was chilly but not rainy. We got the most rain on Thursday, but even then I managed to go out.

If we were having coffee, then I’d tell you that I did achieve the perfect month on my Apple Watch in February. My March challenge is incredibly easy: get in at least 3.63km of walking/running on at least fourteen days this month. I always thought the challenges were based on the previous month’s achievements, but I’m pretty sure I got a lot more steps in during February.

If we were having coffee, I’d report that I’ve been struggling again. This led to a number of arguments between me and the staff. Particularly, it frustrates me to no end that some staff are much more likely to react angrily to my irritability than others. As a result, I don’t accept gestures indicating they support me from these staff. Like, if you’ve first been telling me off, I won’t accept it when you offer me comfort. Unfortunately, my assigned staff claims this differing treatment is just how it is and she says it’s because I don’t accept the same treatment from everyone. This came across as if she was holding me responsible for the different approaches.

If we were having coffee, I’d also share that I’ve been frustrated with my day schedule and particularly the lack of clarity in it. I particularly don’t like the fact that, each time, I’ll have to choose an activity out of fifteen or so options. Thankfully, I was able to turn my frustration around today and decide that, on Monday, I’m going to the next town to buy groceries and, on Tuesday, I’m going to cook dinner for the home.

If we were having coffee, I’d share that part of my struggle is the extreme discrepancy between my intelligence and my emotional functioning. I’m said to function emotionally at a level comparable to a child under 18 months of age in most respects, but my IQ is above-average. Moreover, I happen to have an interest in psychology and social work. As a result, I, for example, know more about the theory of care and support than most of my staff, but I can’t apply it to my own situation and not just because I’m the client.

Like, when I’m in a good place mentally, I sometimes find myself pointing out ways staff are asking too much of me emotionally, but precisely because I can say so, I’m judged not to need the support I need.

If we were having coffee, I would however also share that I still experience moments of joy. For example, on Monday, a new student staff was being introduced to my activities and we created a unicorn (of course) out of polymer clay. This time, because the unicorn was rather fat and the staff had placed the front legs far apart, I chose to add a heart to its belly. I also decorated its back with rhinestones. Two pictures below, because my staff couldn’t capture both the heart and the rhinestones in one.


If we were having coffee, lastly I’d tell you that I struggle with self-criticism and this also leads me towards less creativity. I, however, overcame the feeling that I “should be better” sometime on Tuesday when I created a rather simple bracelet. It was just beads stringed onto elastic wire. However, looking at my comment about emotional development, I sincerely believe I did a pretty awesome job, since a toddler can’t do this at all.

Sorry for the rambly post. I’m still feeling hazy after another meltdown. By the way, no meatballs for our evening treat, as somehow they’d disappeared.

February 2025 In My Kitchen

Posted on by Astrid

Hi everyone! A while ago, I discovered Sherry’s In My Kitchen linky. As most of you know, I don’t have a kitchen, but of course my care home does. I’m using this opportunity to share some thoughts about the foods I’ve prepared and/or consumed lately. Do polymer clay-related musings count too, since polymer clay is cured in an oven? Just kidding (a bit).

Last week, like I think I shared, I visited the next town’s market and bought olives, fried chicken and peppers. I also bought arugula at the supermarket. My staff whipped up the most delicious salad out of these and some carrots that were in our fridge. I had some the next day as well. Sadly, I was under the impression that the staff had used up all peppers, only to be told yesterday that there were still peppers in the fridge. Those had by then gone bad.

I also bought blueberries and have been adding those to my muesli and quark that I eat for breakfast almost each day.

I’ve also been making smoothies lately. For example, a few weeks ago, we had lots of bananas that were on the ripe side, so we chose to whip up a smoothie with them. My current blender has only a 1 liter container, so at first I used to make only about four cups of smoothie and share them with my fellow residents who also stay up later.

Yesterday, a staff offered to help me prepare a smoothie for the entire home that we could use in place of our evening soft drink. Looking back, creating more smoothie than my container can hold is as simple as pouring the smoothie into cups then reloading the blender. The staff peeled and cored the apples and pears, something I think I could’ve helped with too, but oh well. I chose to add cinnamon, cardamom and clove, as well as soy milk as a liquid. The smoothie was absolutely delicious!

For the upcoming month, I’m really hoping to do more in the care home kitchen. Honestly, I feel I could easily be whipping up my own salads and do more in the smoothie-making process. I’ve also been looking at treats and even main meals to cook. I mean, I have the two-hour supported activity time slot in the afternoon and this often is currently spent on nothing more than a walk. I have been nagging my staff for a more structured activity schedule for months, but this seems to be rather difficult. One can always hope though.

Spoon Theory

Posted on by Astrid

Hi everyone! I’m back after more than a week of not touching the blog. I feel horrible for having neglected something I really love over the past few years, ie. my blog. However, I just don’t seem to have the spoons for it.

Spoons? This week’s prompt for #SoCS is “spoonful”. I immediately thought of spoon theory.

Spoon theory is a way of describing life with a chronic illness or disability that limits someone’s energy levels when compared to non-disabled people’s energy levels. I haven’t delved deep into it, but the way I understand it, each person has a set number of “spoons” or spoonfuls of energy. However, for a disabled or chronically ill person, daily activities take up more spoons than they would for someone who is currently healthy and non-disabled.

I was thinking of this when, after a dispute with one of my staff over temp workers, I wanted a way to explain how hard it is for me to deal with a temp worker, especially when they haven’t been told what to do with/for me, because “she can explain everything really well”.

For example, let’s say we each have ten spoonfuls of energy a day. The actual number doesn’t matter, but the point is it’s the same for someone who isn’t disabled, like the staff, as it is for me. For a non-disabled staff, their first spoonful of energy of the day might go to showering. For me, it goes to processing the staff’s greeting in the morning and figuring out who is going to help me with my morning routine. Then, if it’s a temp worker, the next spoon goes to introducing myself and figuring out whether I “know” them already (as some of them claim I should “know” them when they’ve been my staff just once many months ago). Then, another spoon goes to thinking of whether it’s a day I’m supposed to take a shower (which I hate, so doing it everyday to skip this step isn’t really an option) or just do a quick wash. Showering costs me at least two additional spoons, often more. Then it’s not even half an hour into my morning routine and I’ve already spent half my spoons for the day. I accept this reality, but additional spoons go into explaining my routine to temp workers even though a lot of it is in my day schedule. When a temp worker (or even a regular staff who rarely works mornings) helps me with my morning routine, this usually means I’m overloaded by the time I’ve finished breakfast.

And just so you know, getting up on my own and doing my entire morning routine independently, would mean I’d spent all of my spoons by the time I had gotten dressed or even earlier. I tried this when at the intensive support home, where the reasoning was that if you can do something physically, it doesn’t matter how much energy it costs. I was then told I was being “negative” for going into bed right after my shower.

For your information, spoon shortage does not just result in physical exhaustion. For me, it often results in mental overload, which I may show as a meltdown. Then people reason that melting down costs energy too so why am I “choosing” to spend my spoons on that? The thing is, meltdowns aren’t a choice.

I honestly feel that staff in general, not just the staff who refuses to support me after said dispute, need to be more aware of spoon theory. Then they’d understand better why I can walk for 45 minutes but not do my personal care completely independently. Hint: walking is just one action for me (putting one foot in front of the other). Oh, that’s two because I have two feet. However, my point is that walking isn’t nearly as complex a task as personal care is.

That being said, I feel that spoon theory would not just help me, but the other clients too. There’s a client here who “takes advantage” of the others by not doing any chores, according to the same staff who tells me I can explain everything perfectly fine so the temp worker doesn’t need introducing. She’s all for fairness and equality and everyone being the same. Newsflash: we aren’t. And who knows how much energy goes into this client’s everyday activities?

Okay, this post goes into the “Awareness” category because it’s not really a ramble. Well, it is, but it is also a post to raise awareness. I haven’t added the “#SoCS” ending to my post title because, well, not sure why but it didn’t feel appropriate. I hope that’s okay.

Abandonment Wounds: What Will Happen If I Can No Longer Mask?

Posted on by Astrid

I’ve been struggling with attachment issues a lot lately. Not related to a specific person this time. I mean, yes, like I said on Wednesday, four of my “favorites” among the staff are either on leave or will be leaving (be it temporarily or permanetly) soon. That’s not the problem, since I’ve learned the hard way to expand my list of “favorites” when necessary. It’s in my best interest too to avoid a situation like the one with my assigned staff in Raalte, who was leaving and left me with just two other trusted staff.

The issue I’ve been dealing with lately, is much more existential: the knowledge that, if I’m truly myself, I’m unacceptable. Not because I’m some kind of criminal. I’m not. Rather, I’m an outcast. And while I won’t be in the prison system for that, being shoved around care home after care home while not having family to advocate for me, will be equally horrid.

I have been struggling with memories of the circumstances surrounding that assigned staff leaving. A few months before she left, I sent her a rather dramatic E-mail about how no-one will be in my life forever. Well, my spouse says we’ll always be in each other’s life, but truthfully we can’t know that. Besides, when we lived together, there were just a little too many situations in which my spouse (understandably) was disappointed in me that are however things I couldn’t help. For clarity’s sake: I don’t blame my spouse, but maybe with my being multiply-disabled, I’m not suited for “traditional” long-term relationships. Ha, now I’m reminded that my spouse often reminds me that I said when we were choosing to be a couple, that I didn’t want a traditional relationship.

Of course, the reason I’m undesirable by society’s standards isn’t my fault. Like, I can’t help being disabled. But just because it isn’t something I choose, doesn’t make it any less real or hurtful. In fact, it hurts more because I can’t choose not to be me.

I mean, I’ve masked more or less successfully for many years. Mostly less successfully, but my parents prevented me from landing in the care system at a much earlier age than I did by claiming the police and other people who thought I was disturbed, were just stupid. They were masters at manipulating the system. I am not.

Back to my assigned staff in Raalte. She was the first to take my wish to leave seriously. I assume she genuinely felt that the intensive support home could better serve me than the care facility, but I also assume she had a team and a manager to deal with and it remains a fact that some of her coworkers couldn’t cope with my behavior. Which was, for the record, much less challenging than it is now.

It genuinely scares me to think of what will happen if (when?) I can no longer mask at all. There was this news feature sometime in 1997 or 1998 about a girl, aged about sixteen, who was too intelligent for intellectual disability services but who still couldn’t cope in adolescent mental health services and was, as a result, restrained long-term. After her family sought media attention, she was transferred to a treatment center for youth with mild intellectual disability and severe challenging behavior. I don’t know what became of her.

Last week, when I had several severe outbursts related to my most recent frustration, I begged my support coordinator to ask the behavior specialist to involve the Center for Consultation and Expertise (CCE) again. I really want to get the ball rolling on getting them involved before it’s too late and I’m being kicked out again, like the last time they were involved in 2018. In this sense, a consultation might help more this time, because at this point, as far as I know, staff aren’t yet so much at their wit’s end that they see the situation as unresolvable. But I’m scared of what will happen if they do get to this point, like apparently some staff in Raalte were.

A Recent Frustration Related to My Care

Posted on by Astrid

Hi everyone. I haven’t blogged in over a week because I’ve been struggling once again. Honestly, I can see why judging from my experience over the past 2 1/2 years, people would say I’m always struggling anyway. The thing is, there are and there definitely were times I am or was struggling less. Besides, to say that this is just the way I am, is blaming me for the system not meeting my needs. And we all know that the system is broken and this is a reality, but I’m honestly getting frustrated with how little recognition I get for my attempts at coping with this reality and how much blame I get when I fail at doing so.

Now on to why I’m struggling again. I mentioned about a month ago that I would no longer be assigned unfamiliar temp workers. This is a definite positive. However, with this home having twenty residents, many of whom with high support needs, the pool of so-called familiar staff consists of at least thirty people. That isn’t the problem: I am fine with all thirty coming into my room to do activities with me, just like I’ve always been fine with the occasional unfamiliar temp worker. The problem is that all thirty so-called familiar staff are supposed to be assigned to me equally often and I’m not allowed to have a preference. The reason is the idea that I’ll add more people to my trusted circle if they’re required to be assigned to me more often.

I can see their point, in particular because four out of eight staff who I consider part of my trusted circle now, are either on sick leave or leaving soon, be it temporarily (on maternity leave) or permanently. I can see why one would like to avoid a situation like with my assigned staff in Raalte, who left about two months before I did and who at the time was one out of only three staff I fully trusted. Then again, I’m never going to have a circle of thirty, just like most people don’t have thirty close friends. And that’s what this whole “get to know everybody” thing feels like. I do try to expand my circle as needed, but I just can’t treat all staff the exact same unless they treat me the exact same and, in that case, we’d all be losing sight of each other’s individuality.

Besides, the staff don’t follow their own rules when it suits them. For example, it’s a rule that I’ll see one staff for my morning activity and lunchtime, but they’ve been switching that around when they felt like it, yet telling me (and each other) of the rule that they must switch at other times. In other words, the staff require me to deal with a minimum of six switches of staff per day, but when it suits them, this can be increased and yet it can’t be decreased. That’s while I made it clear in the document detailing my care needs last summer that I don’t do well with staff switches. Yet they blame me for the agreements we made back then not working, even though they didn’t follow through on most of them. Most notably, they’d told me they’d try to have a trusted staff assigned to me most days for at least part of the day and that just wasn’t happening. In fact, eight out of ten times at least, the staff assigned to do nearly four hours of support with me, was a random, unfamiliar temp worker. I don’t blame myself for this not working out.

I’m sharing this post with the Writer’s Workshop for this week. It was a recent frustration, in that this rule (about required switching) hadn’t been adhered to as strictly as it’s now until last week. I’ve also had a lot of discussions about it with my support coordinator this past week. I’m having a care plan review next week and am planning to raise this issue both specifically and as an example of a general trend towards blaming me for a broken system and mistrust towards me. After all, staff are claiming I would only want my “favorites” assigned to me if they didn’t require staff switches as often as they do now. Let me just say this wasn’t even the case in Raalte, where I did have a core team of at least somewhat trusted staff.

Echolalia

Posted on by Astrid

Hi all! I’m officially joining the #JusJoJan fun today, because the prompt inspired me. It’s “echo”.

There’s a resident at my home who repeats everything she hears. I was actually confused when I first got introduced here, because this resident has a very clear, high-pitched sing-song voice reminiscent of staff. When I asked why the staff were saying everything twice, one of them explained that this person wasn’t a staff but a client and she experiences echolalia.

I immediately assumed she’s autistic, but she isn’t. She has Sanfilippo Syndrome, a rare (albeit relatively common in the Netherlands) metabolic disease that leads to cognitive decline. Apparently, this person’s cognitive decline is so advanced that she doesn’t recognize anyone, except for sometimes her parents.

It’s interesting to note that, when I first got here, she always only echoed the staff, not the other residents. Now she regularly echoes me and sometimes other clients too. She still doesn’t repeat it when someone tells her off for talking too much. I think that’s funny.

I, being autistic, sometimes experience echolalia too. When under a lot of stress, I engage in immediate echolalia, like this other client: I repeat what has just been said. Sometimes, I also experience delayed echolalia. When this happens, I notably echo my fellow clients.

When I’m in a mentally good place, I sometimes feel guilty for it, because it feels like I’m appropriating them. That’s not my intention though and, well, I’m not echoing on purpose anyway.

#WeekendCoffeeShare (January 3, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. I usually do this on Saturdays, but I want to do it today. It’s 8:30PM, so I’ve had my last cup of coffee and soft drink for the day, but as usual, you can always grab a cup of your favorite beverage. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. New Year’s was windy and rainy. Today, we got a bit of snow. Let’s just say I can’t wait for spring.

If we were having coffee, I’d then tell you that, due to the weather, I didn’t meet my movement goals most of this week. That is, over New Year’s, I didn’t feel safe going outside because of the fireworks. My monthly challenge on my Apple Watch is to burn 335 active calories a day 14 times. This should be easy, but I’m honestly a bit discouraged right now.

If we were having coffee, I’d share that, on Monday, I tried to make a smoothie only to discover that tons of black critters had crawled into my blender. My outdoor cushions had been next to the blender and that’s where they came from. The cushions were horribly moldy too. Needless to say I threw out the cushions. I could’ve washed the blender, but the idea of these critters ever having been in it, creeped me out, so I discarded it too.

Thankfully, when I explained the situation on the phone, my spouse offered me a blender that had been sitting in our house since my spouse’s birthday in 2023, because it was a gift from me. Apparently my spouse hardly ever uses it. It’s a lot smaller than my old blender, so no more smoothies for the entire home. It works okay though, as I made my first smoothie in it yesterday.

If we were having coffee, I’d share that my New Year’s was okay. I had originally planned to stay at the institution, but ended up spending the night with my spouse at our house. For the most part, we just chilled and watched a little TV. We ate a delicious pasta bake for dinner. We hardly made it to midnight before feeling too tired to remain awake. Unfortunately, the fireworks were really bad, so it was 2AM before we properly slept. Neither of us usually sleeps well when we’re together anyway. I left by 2PM on New Year’s day.

That evening, the staff here at the institution had ordered salads, baguettes and various kinds of meat. It was good. I also had a cup of ice cream topped with loads of whipped cream for dessert.

If we were having coffee, lastly I’d share that, like I suspected, I gained weight over the holidays and am now three pounds over my upper goal weight. I’m pretty sure though that, if I gained three pounds in two weeks, I can lose at least part of the weight again before my dietitian’s appt on the 15th. I am actually considering stopping seeing the dietitian, because I know full well what to do to remain somewhat healthy and I don’t think the dietitian helps keep me accountable. I don’t want to ditch my goal (eh, hope) of being more health-conscious, but I honestly don’t see how the dietitian helps me with this. I’ll give it some more thought and may use my weight on the 15th (ie. a factor of how successful I am at actually following through on what I know to be healthy) as a factor in my decision.

My Hopes for 2025

Posted on by Astrid

Hi everyone. It’s January 1 and I am absolutely not motivated to set resolutions or goals for the new year. In fact, I think calling them “hopes” like I usually do, isn’t doing the trick either. I’m too scared that voicing my hopes is tempting fate. However, I’m going to push through anyway and write them down.

1. Be more aware of my eating habits and eat more healthily. I am still within the agreed-upon weight range for my dietitian (or was when I last weighed myself, which admittedly was before Christmas), but barely so and I’d really like to lose some weight. More importantly though, I need to make sure I’m making healthier food choices.

2. Find a physical activity other than walking that I will be able to do regularly for a longer period of time. I tried swimming, but it’s rare that a staff who can meet my needs is assigned to me during the time the pool is open for me. I’m thinking of going to a gym.

3. Give movement therapy (Sherborne) a fair chance and make some progress on it. I do think I gave play therapy a good enough chance, especially since my first impression of the therapist was already quite bad and I went nine times or so. However, I really do think I need to step out of my comfort zone in movement therapy if I want to make it work.

4. Further taper my medication. This needs a caveat though, since I need to really be aware of whether decreasing my dosage is a wise decision and, if not, what the alternatives are.

5. Remain relatively stable mental health-wise. I have been doing okay over the past month or so and my staff say that certainly after my last med taper, I’ve been relatively stable. Like I said, I’d really like to taper my medication even further, but it’s a priority for me to stay within an acceptable range with respect to mental stability. Although I feel that meds are for me, not anyone else, I don’t want to become an unmanageable monster.

6. Work on self-improvement in the areas of communication, mindfulness and distress tolerance. This is a biggie, but I feel that I really need to work on better interpersonal skills.

7. Broaden and deepen my creativity. I may want to explore hobbies that I have tried before but thought unsuitable, such as jewelry-making. I also hope to develop my skills further in the hobbies I already pursue, such as polymer clay, smoothie making, etc. I hope to do more baking and cooking too.

8. Blog and write more regularly. I wrote 110 posts over 2024, which is a big disappointment for me. I hope I’ll be able to blog more often. I also hope to write more regularly in general.

9. Stay at this care home. I’m really hoping that I won’t make another stupid mistake and end up moving again, either because the powers-that-be think that I want to or because the staff consider me unmanageable.

What do you hope to achieve in 2025?

Crafting Lately (December 16, 2024)

Posted on by Astrid

Hi everyone. I finally feel as though I’m actually adjusting to life in this care home and feeling like this could maybe, hopefully be my home for a long time. This is a huge positive, as I’ve never felt this way in any place before except maybe for the care facility in Raalte in late 2021. As most of you know, that didn’t last. Please keep your fingers crossed that this feeling of finally belonging won’t be the beginning of the end this time around.

I had a good week last week. I am pretty much over whatever I was sick with all of the week before, probably a mild case of COVID. Since I no longer need to deal with unfamiliar temp workers and most of my staff last week know how to help me with my crafting, I’ve been able to be pretty creative.

I think I mentioned a few weeks ago that I’d been trying to craft a polymer clay unicorn for a new staff who’s as much into unicorns as I am. Unfortunately, one of the wings fell during the curing process and it hung in such a position that I could neither pull it off and craft a new one, nor be content with how it looked.

About a week ago, I was thankfully able to create a new unicorn. No wings this time, but I did use a tiny (5mm) heart cutter to create a little symbol for on the unicorn’s side.

This is my default unicorn in a sitting position. Its body and head are done in Premo white, while its mane, tail, ears and horn are done in Fimo Effect rose quartz. The tiny heart on its side is done in Premo 18k gold.

Then, I created a Christmas tree. This one I did by rolling out a snake then rolling it up into a coil that decreases in size as it goes up, thereby creating the tree effect. I used Fimo leaf green for the tree and Cernit Christmas red and Fimo Effect glitter gold for the baubles. I then added a spark in Fimo Effect glitter gold to the top.

In hindsight, I probably should’ve used Premo forest green and Premo 18k gold rather than the Fimo colors. However, I haven’t opened my Premo forest green yet, because we’re out of labeling tape and hence I cannot yet label the Ziploc bag I’ll put it into once opened. I also want to use an actual star for the top next time, but my star-shaped cutter hadn’t arrived yet.

Lastly, I decided to challenge myself with the unicorn design and create a unicorn-in-a-mug. That is, I’m lazy, so of course there’s no actual unicorn body hiding in that mug. I used Premo white for the mug and Cernit violet for the unicorn head. For the mane and horn, I used Fimo Effect metallic silver.

Originally, my staff had taken the photo of the unicorn from a slight angle, so the mug wasn’t fully visible and the thing looked like a unicorn in a white gown. I decided to ask another staff to take a new picture today.

I really loved being able to craft again. I’m so happy my creative juices are flowing.