Poem: Darkness

Posted on by Astrid

Darkness lingers all around
It’s like it envelops me…
Where will I be found?

Something strikes me by surprise
A sound, a smell, a shock…
Will this be the end, my utter demise?

I’m scared, I cry out for help, but no-one hears
If I stay here, am I doomed, like they thought…
Is this the realization of my fears?

Lost eyesight, I’m on your side
I think to myself, this is it, I give in…
Look on the bright side, suicide…

This poem was written for dVerse’s Poetics. The prompt is to pick a line (or more than one, as I did) from a song by Nirvana. I remember only the very popular songs by that band, and only vaguely, but I loved the opportunity to write an angsty poem.

#WeekendCoffeeShare (February 17, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. Like most times, I’ve already had my last cup of coffee for the day. I hope we still have apple and peach-flavored Dubbelfrisss, my favorite soft drink, though. We’re permitted a soft drink each evening as opposed to just on weekends as of this week, but I haven’t had it each day and I’m pretty sure I’m the only one who drinks this particular soft drink, so I’m optimistic there’s still some left. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first, I’d talk about the weather. It’s been a rainy but mild week. In fact, on Thursday (if I’m correct), the daytime temperature climbed to 15°C. Today was the best day of the week as far as it not raining goes, but we did get a few drops here and there.

If we were having coffee, I’d share that I taught myself and subsequently my staff a new dice game called Centennial. It is a welcome distraction from the usual Yahtzee. I have also been playing Mexican, which is supposedly a drinking game but it can be fun without the beer too.

If we were having coffee, I’d tell you that, on Thursday, I finished the first pair of polymer clay earrings I can actually wear. The previous pairs of earrings I created had been hooks, which I can’t yet wear due to not having had my ears pierced long enough. I finally found an easy-to-follow YouTube tutorial on how to embed earring posts into polymer clay. Even though I could only do a small part of the work myself, I am quite satisfied with the result. And, of course, I did create the original earrings myself. These are a simple design of leaf green Fimo ovals with gold Fimo liquid around the edges for decorating. In the future, I really hope to create more earrings.

If we were having coffee, I’d share that I rewrote my care plan together with my support coordinator. I’m still unsure as to what I think of it.

Particularly, I feel rather stressed out about the portion about my emotional functioning. I had an emotional developmental assessment done in 2018, which determined I function in most areas comparable to a child age 6-18 months. In some areas, it estimated my functioning to be much higher than I would estimate my own, such as in object permanence, while in others (such as handling unfamiliar material), it estimated me to function at a much lower level. I mentioned this to my support coordinator, who proposed the assessment be repeated. Since my one-on-one is largely based on my poor emotional functioning and the discrepancy between this and my IQ, this stresses me out. This especially since my assigned staff, who will likely be asked to complete the associated questionnaire, grossly overestimates my capabilities based on my verbal skills.

On a positive note, my previously assumed exact IQ score, which dates back to a test done in 1999, was finally removed. Yay, I am no longer 154. Instead, I am said to have an “above-average IQ”, which is more in line with a more recent IQ test (also a little dated, but at least not 25 years).

If we were having coffee, lastly I’d tell you all that, next week, I’ll finally be taking my next step in tapering my antipsychotic, Abilify. I took two tiny steps back in 2022, but remained at my current dosage ever since August of 2022 due to never having stabilized in the intensive support home. Now I’m not sure it’s the right time either, but then again I doubt it’ll ever be the right time, in that I’ll probably never be fully stable. I will go from 25mg to 20mg a day. I will stay on this new dosage for at least six weeks, unless of course I’ll spiral out of control to the point of necessitating we return to the old dosage. Wish me luck!

The Wednesday Hodgepodge (February 14, 2024)

Posted on by Astrid

Hi everyone. Happy Valentine’s Day! It’s Wednesday and I’m joining in with the Wednesday Hodgepodge. Here goes.

1. What does love mean to you?
To me, it means thinking that (and acting accordingly) someone is special to you. This special someone could be God, someone else, but it could be yourself too. I mean, I know that in many traditions, it is commonly believed that to love is to value someone higher than yourself, but I do think self-love is love too. In fact, I recently commented on someone else’s blog that, if everyone loves themselves, no-one will be unloved.

2. Is love blind?
I am blind, so my love certainly is. However, whether love in general is blind, I honestly wouldn’t know. I’m not even 100% sure what this expression is supposed to mean. Probably something along the lines of love preventing people from judging the person they love. Which would be weird, since justice is also characteristically thought of as blind. Oh well, maybe it means love prevents people from judging others based on appearance. In that case, as someone who has never been attracted to anyone for their appearance (in fact, I didn’t know my now spouse’s hair color until we’d been together for several months) but seems to be in the minority here, I cannot be trusted to give my representative opinion on this.

3. How do you remember Valentine’s Day as a kid? Do you have any special plans for the day this year?
I don’t remember it as a kid. In fact, I don’t think back in the mid-1990s, it was a thing for kids here in the Netherlands. In high school, I do remember kids handing out roses and can vaguely remember once having gotten one, probably as a prank.

My spouse and I aren’t celebrating this year. In fact, though we used to give each other small presents each Valentine’s Day, this year, since we both have a lot on our minds, we decided to take the pressure off by agreeing we’d give each other presents whenever we felt like it. I honestly feel that, in a committed relationship, love is an everyday thing. If you need Valentine’s Day to remind each other you still love one another, I doubt the relationship is going to last.

4. Are you a fan of the movie genre known as “rom-com”? What’s your favorite (or one of your favorites)?
I’m not a movie watcher, so no. In books, I do like them occasionally but I wouldn’t say I’m a fan.

5. What’s something you recently put your heart into?
Nothing. I’m struggling a bit, so I don’t feel inspired for any bigger (or even smaller) projects.

6. Insert your own random thought here.
I enjoyed a great Thai meal out with my mother-in-law yesterday evening. We went to Buddha Garden, the same restaurant in Apeldoorn I’d been to with my spouse and parents for my birthday. The food was just as delicious as it’d been the last time I went there.

My Dream Room

Posted on by Astrid
Daily writing prompt
Write about your dream home.
View all responses

When I saw this prompt, I was pretty sure I had written a zillion posts answering this very same question on here already, but when I did a quick search on my blog, I found just one: a post I wrote in 2021. This was long before I decided to move out of Raalte and then move out of the intensive support home again. Then again, neither of those moves had to do with the interior of the homes I resided in.

In fact, my room in Raalte was the best room I’ve had in a care facility so far, except for maybe my apartment in the independence training home. My current room, though not bad, is one of the worse ones in terms of its set-up. For one thing, it’s the very first room from the living room. This has its positives, but a huge negative is the fact that the living room television is literally set against my room’s wall. I’m not complaining – when I came into care, I never sought a dream home. I sought reasonably good care.

Now, to actually get to the point, I’m going to share some things my dream home would have.

First, it’d not be large. It’d not be a home at all, really. More like a studio. After all, I already occasionally got lost in my apartment in the intensive support home. I’d like a room similar to the one I had in Raalte, really, maybe slightly larger. It’d have its own bathroom and kitchen, of course, like I had in Raalte too. It would, unlike my room in Raalte, be on the ground floor and have a door that would lead to a patio where I could sit outside on warm days.

The bathroom would be luxurious, with its own bathtub for me to relax in. The kitchen would have all the things I need to cook a simple meal with assistance, like a microwave oven, fridge, etc.

Lastly, there’d be an armchair for me to relax in. Then there’d be all my regular furniture, such as my desk, craft table, cabinet and bed. Now that I think of it, I wouldn’t want a sensory waterbed, as then the room would be either too crowded or too large for me to navigate. I’d maybe like an additional sensory room. Not yet sure of that one.

I would, of course, decorate my room/apartment/whatever. I’d have my walls painted the same pink color I currently have on my wall here at the care home. My spouse reminded me that I had originally wanted my wall here to be painted lilac. I replied that I’d already written in this post that I’d go with pink, so pink it will be. I would add colorful, handmade wall art. In fact, this might become a reality here in my current room someday in the not too distant future, as one of my staff helped my fellow residents create wall art with colorful pieces of felt and I’m pretty sure with her help I could do a similar work.

The Downside of Praise

Posted on by Astrid

As a child, I was often praised excessively for my achievements. I remember one day, when I did calendar calculation at a family get-together, calculating what day of the week May 3, 1327 (for example), was, my mother exclaimed: “She’s sublime, she’s a genius!” For those who don’t know, many autistic or otherwise developmentally disabled people, including those with lower measured IQs, have this skill as what is stereotypically called a “splinter skill”. Now don’t get me started on the ableism of the term “splinter skill” when applied to people with lower measured IQs, but calendar calculation alone definitely doesn’t make someone, anyone, a genius.

And just so you know, it’s incredibly counterproductive to praise a person for who they are rather than what they do. It is usually better to praise someone for their achievements by naming those achievements as well done rather than praising the person themself. Moreover, any excessive praise, even if you say “you did an awesome job calendar calculating”, can be taken the wrong way.

Besides, many people feel they are praised for something that doesn’t reflect their personal values. For example, when I am praised for completing a personal care task, all I see is pressure to be able to do it independently the next time too. When, however, I am praised for creating something nice out of polymer clay, for my writing or the like, I feel like I’m valued for my contribution to the world.

There is, or so I’ve read, some school of thought that says any praise, whether person-centered or accomplishment-based, should be avoided by parents or carers. This doesn’t mean parents or carers should completely ignore their child’s achievements. Rather, simply pointing them out and engaging with the child about their achievements, will, according to these people, help the child develop a healthy sense of self. Honestly, I am inclined to agree with this.

It’s Just Us, Or Is It?: Power Dynamics in Care

Posted on by Astrid

I am currently reading a book called The Dark Side of the Mind by Kerry Daynes, a memoir by a female forensic psychologist in the UK. In her first chapter, Daynes writes about how her college date tells her there’s no justice, it’s just us. Then she goes on to talk about her first job, which is really an unpaid position, at a correctional facility called Wakefield. There, the philosophy is “us vs. them”, “us” being the “good” guys (or girls), ie. the staff, and “them” the inmates, who often committed horrific crimes, such as rape, murder or both. This “us vs. them” mentality was often used to reinforce a rather exaggerated power dynamic, to say the least. As it turns out, it’s not that black-or-white, in that, several years later, a staff member Daynes worked with was given a long sentence for similar horrific crimes.

I want to use this example to talk about power dynamics. Not in the prison system, as I have no experience with that, but in the care system. In a sense, in care, at least as much so as in prison, there should not be “us” and “them”, since we’re all people first. The mere fact that I am disabled and my staff are currently non-disabled, shouldn’t make a difference. Neither should it when it comes to my fellow residents who are deemed unable to make their own decisions.

I just had a discussion with one of my staff about this. This person maintains that she’s in fact at my service, almost like I’m her employer. When I pointed out that she gets to decide when it’s necessary to physically drag me to my room (not that she personally ever has), she said this is because I live with nine other people. Yes, but if I lived with nine other people without staff, such as in student accommodation, no-one would be dragging me to my room for yelling and, if the situation did escalate too much, the police (who everyone except for maybe the police themself admits have a position of power) would be called.

I also mentioned some situations from the intensive support home. For example, staff grabbing a large cookie while giving us a tiny biscuit. “Who’s boss here?” one of the staff once actually asked one of my similarly opinionated but unfortunately less eloquent fellow residents. She named the names of the support coordinators. “And when they’re not here?”, he continued, clearly wanting to hear that the available staff are. I pointed out later that no-one is boss here, only to be told that this was a simplified way of explaining this to my fellow client.

When I told my current staff about this and other examples, I was told this is the way the intensive support home works and that she doesn’t agree with it. At the same time, she told me that, if I want a large cookie, I can get it because I’m capable of making my own decisions, while my fellow residents can’t. While I understand this, on a large scale, may be so, it isn’t necessarily true: I don’t technically follow my agreed-upon food plan either and that’s considered my responsibility, while if a fellow client points to a single extra cookie, that’s denied because their family (or the staff) agreed on a food plan. However, if I have an extra cookie, it will do the same for me as it will for another person (unless said cookie has allergens in it for the other person or whatever). I wanted to raise awareness of how, on a micro level, staff, including the staff who believe they’re at our service, are exercising their power more than they should be.

Power dynamics, for clarity’s sake, cannot easily be eradicated. Nor am I absolutely sure they should be. However, those in positions of power should be extra conscious of their position. And especially when it comes to situations in which they believe they have every rhight to make decisions for another person, such as when I got dragged to my room and when the staff decide another resident cannot have a large cookie (but said staff and I can).

What, When, Where, With Whom and What After That?

Posted on by Astrid

I have been struggling with staff randomly switching up who will support me, my day schedule being changed for various reasons, etc., a lot lately. This causes me a lot of stress. Like regular readers of this blog may know, I have about eight hours of one-on-one support a day, divided into blocks between 8:15AM and 9:30PM. Between my support moments, I have unsupported time slots that range in length between 30 and 45 minutes.

I often struggle with my unsupported time, looking at my watch every few minutes to see whether my support staff will be coming yet. I also look at my watch a lot during my supported times, because I dread the moment my staff unexpectedly say they’re leaving.

Last night, I thought up a way to possibly solve this issue: to organize my day schedule more by activity. We need to watch out this doesn’t become the stupidly vague day schedule my former support coordinator at the intensive support home gave me. After all, when the day schedule says that we’re going for a walk and doesn’t specify how long that walk will be and there are absolutely no timeframes related to the activity, some staff will take me for a three-minute walk around the home while others will take me for an hour-long walk. Then, if after the walk I’m supposed to have unsupported time until lunchtime, the length of my unsupported time could range anywhere from like 30 minutes to nearly an hour and a half. This was actually what my day schedule back at th e intensive support home was like.

What I’d like instead, is to know what, when, where, with whom and what after that. To put it more concretely, I’d like to discuss during my morning routine who will be supporting me for the rest of the morning shift (and after handover for the evening shift), what we’ll do, including what I’ll do during my unsupported times, and to put those activities on a tactile “picture” board (with Braille instead of pictures). I think knowing what I’ll do during my unsupported times will lessen the number of times I look at my watch too. It also will mean I know who’ll support me for my activities, so that I know whether I feel comfortable with them doing certain activities with me or not.

I’m pretty sure this is all wishful thinking. One of the staff, who happens to be one of my “favorites”, didn’t think it was a bad idea. Then again, my assigned staff said I was lucky that I heard 25 minutes in advance that he was going to be there for my early afternoon activity, because his shift doesn’t start till fifteen minutes before that activity starts and if it was up to him his morning shift colleague would’ve conferred with him prior to telling me that he was coming. That would mean I’d get at best ten minutes notice. According to my assigned staff, no-one specified how much preparation time I need, so technically speaking five minutes should be enough. I think that’s rather, well, literal-minded at best and purposefully twisting the truth at worst.

This post was a rather long contribution to this week’s Stream of Consciousness Saturday, for which the prompt today is “watch”. I usually don’t write pieces that are this lengthy and in fact struggled to maintain stream-of-consciousness style.

January 2024 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of January, so I’m reflecting back on the past month. This month was rather eventful but slow-going at the same time. Christmas sounds like centuries ago. As usual, for my monthly reflections, I’m linking up with What’s Been on Your Calendar? (#WBOYC).

The month started out rather positively with me being full of energy, new hope and inspiration. Indeed, I did create some cool new polymer clay things over the past month, including a Valentine’s frog. That one now stands on a Valentine’s Day-themed (well, kind of) table in the living room of the other side of the home.

Polymer Clay Valentines Day Frog

I also crafted the cat I showed you all earlier, a penguin, a rabbit and a few things that I might be turning into earrings at some point.

Last week, I also cooked rice and chicken for myself and my fellow residents. This was great.

Early in the month, I didn’t have many visitors due to various circumstances, but thankfully I was able to see my spouse twice this month anyway. I also saw my mother-in-law twice, on the 16th because it was every-other-Tuesday (we’d skipped the 2nd because I was sick) and last Monday because I had my care plan review.

This care plan review probably warrants its own post, since it was a lot to process. Midway through the month some issues that I’ve been having with my assigned staff, that I can’t go into here, came to a point where I was greatly struggling too. This and some other things, including the fact that I frankly don’t do as well with male staff as I do with female staff, have led me to request another assigned staff. Whether this can happen, I’m not yet sure of, but I hope so. Thankfully, I do have my support coordinator, with whom I do get along.

A week and a half ago, she and I finally finished my new crisis signaling plan. This has yet to be brought under the attention of all staff and even then, staff have to be willing to follow it.

Last week, a staff not being willing to follow this plan, led to me having a massive meltdown. More specifically, I spiraled out of control because the staff assigned me a temp worker for the late shift, while that entire day there were no staff I sort of trust except for one and she, contrary to what’s in my plan, refused to come over for just five minutes. I was a horrible person to her and the other staff and there’s no justifying that, but it’s sad to realize that her coming over for just five minutes might’ve prevented an evening-long meltdown.

Over the past week, I’ve generally been struggling with all the staff changes, changes to my one-on-one for various reasons and general chaos. I feel, truthfully, like I’m swimming in the North Sea again, as I explained it at my care plan review. The way I explained it then, when I was in Raalte in late 2021, it was like swimming at the shallow end of the pool as far as support went. And, while, like every toddler that needs to learn to swim having their days when they resist the water, I had my bad days, they weren’t due to poor support. Then, the first male staff and, later, some temp workers were introduced to me and I had to endure the odd day when I didn’t get my allocated one-on-one. I struggled massively with this challenge and this was the main reason I decided to move. Then, at the intensive support home, I was thrown right into the Pacific Ocean: a day schedule that was rather stupid, constant staff changes, me always being assigned the new temp worker, etc. Now, on good days, I feel like I’m swimming in a calm lake and, on bad days, I feel like I’m swimming in the North Sea. And then there are those really good days when I feel like I’m back in the pool. Those are the days I’m supported by my “favorites”, as my assigned staff calls them. And just so you know, just because I survived my previous home, doesn’t mean I coped or can cope with the current chaos of my home. Yes, it’s better than it was, but that doesn’t mean it’s good. I try to be understanding of the fact that everyone faces staff shortages, temp workers, etc., but honestly, listening to all the “everyone has to give a little” wears me down.

The Wednesday Hodgepodge (January 24, 2024)

Posted on by Astrid

Hi everyone. It’s Wednesday once again and this means it’s time for the Hodgepodge, in which bloggers answer Joyce’s five assorted questions and add their random thought at the bottom. Here goes.

1. Do you have a word for the year (WOTY)? If so, and you’d like to share, please share. How do you decide on a word? If you don’t have a word are you still on the hunt for one for 2024?
I don’t have one for sure yet, but one has been floating around in my mind for a few weeks. It is “Explore”. I probably should be deciding whether I want this word as my WOTY or no word at all. Or maybe something else will pop up, but I doubt it. I usually don’t think hard on my WOTY, those years when I’ve had one. Last year was the first year in a long while that I didn’t have one, by the way.

2. January 23rd is National Pie Day…will you celebrate? Do you like pie? What’s your favorite?
I didn’t celebrate. In fact, I’m just now finding out about it on January 24. I do like some pies, particularly my mother’s homemade apple pie.

3. Tipping. What are your thoughts, expectations, as to who, when, where? Do you appreciate a store/restaurant giving a “suggested amount”? Have you ever left an extravagant tip?
I’m probably in the minority here but I don’t generally tip and think it’s a stupid thing. If waiters/hairdressers/etc. need a tip, it means their salary is too low and consequently so are the prices of their products/services. Here in the Netherlands, tipping isn’t considered obligatory and is only more or less expected in restaurants. I’ve never left an extravagant tip. In fact, when I do tip, I usually tip only about 10-15%.

4. Share with us one “household tip” that works for you.
I am absolutely clueless about housekeeping, so I’ll need to leave this blank.

5. Influencers on social media are people who’ve built a reputation for their knowledge and expertise on a particular subject. Do you follow any influencers online? Have you made a purchase or tried something new because of that “influence”? If there’s one you particularly enjoy tell us who and why.
Huh? I thought “influencer” was just code for someone who is popular on social media, irrespective of their actual knowledge or expertise. As you might guess from this, I don’t follow any “influencers” as far as I’m aware. I have never purchased anything because it was recommended by a popular blogger, vlogger or Instagrammer.

6. Insert your own random thought here.
I’m very nervous because my care plan review is coming up on Monday. Thankfully, in addition to my assigned staff, support coordinator and behavior specialist, my mother-in-law will be attending. I have some important things that need changing about my care plan. For one thing, there’s extensive descriptions of my traumatic experiences in rather vague terminology. I’d like that made clearer and more concise.

Ways In Which I Was Not a Typical Teenager

Posted on by Astrid

Hi everyone. Today’s Word of the Day Challenge is “Teenager”. This reminded me of a question a fellow blogger, I think it was Emilia from My Inner MishMash, once asked: in what ways we were not like a typical teenager.

This post could have been a lot shorter had I had to answer in which ways I was like a typical teenager. After all, I wasn’t like a typical teenager in any way. That doesn’t mean I didn’t try. Like, I pretended to be a Backstreet Boys fan even though I knew next to nothing about them and had hardly heard their music. I also pretended to have crushes on boys (and girls) even though I hardly knew them and quite frankly didn’t understand attraction.

I tried going to school proms the first few times in high school, but didn’t fit in at all. I also tried wearing what other girls my age wore. My mother asked my younger sister for advice when clothes shopping for me. However, somehow I always missed the mark. I couldn’t wear makeup nor was I interested in it.

With respect to interests, I have no idea what teenagers in the early 2000s were into. I did read what I assume was somewhat popular Dutch YA fiction, but had no friends so couldn’t discuss it with them.

With respect to socially appropriate behaviors, I was way off. Still am. I didn’t know how to take care of my personal hygiene, for example. I remember my sister gave me a deodorant as a birthday present when I turned fourteen, but I didn’t get the hint. Months later, when my teacher reminded me about hygiene because my classmates had been complaining, I still had no clue what an appropriate bathing and personal hygiene routine was.

Back in the day, most teenagers drank alcohol. I tried wine at home when I was fifteen (the legal age for alcohol consumption was sixteen at the time). When I was sixteen, I went out to a pub with a few classmates. I had two beers, the most alcohol I’ve ever had in a single sitting. Later that evening, a guy we were with from another school offered me and another girl in my class some pot, which we accepted. Since I hadn’t smoked beyond a whiff here and there, I probably didn’t inhale anything, as the stuff didn’t have any effect on me whatsoever.

Where it comes to Internet and social media usage, I was probably a rather naive teenager. I wrote posts like this one about my current rather than past life in my public online diary using my full name (I do think it’s still on this blog somewhere too). Not only did I not take my own privacy seriously, but I used teachers’ and other people’s full names when writing about them too. I’m so happy none have ever made a serious problem out of it and I also haven’t been the victim of online predators. That being said, I wasn’t one to make obscene comments, like some other people my age did back in the day using their full name. I would also panic when I accidentally clicked on something that might be unsuitable for minors.

In summary, in many ways, I was like a child in a teenage body. I still often feel like a child in an adult body, truthfully.