February 2024 Reflections #WBOYC

Posted on by Astrid

Hi everyone. I’m sharing this past month’s reflections again, as it’s the last day of the month. February is often a hard month for me and this year was no exception. I honestly feel quite hopeless as I write this post, even though I probably should be feeling cautiously optimistic. Let’s dive in. As usual, I’m linking up with #WBOYC.

During the first few weeks of the month, I shared some more concretely about things I wish would change about my care here at my current care home, only to be told nothing will change until after the summer at least. This caused me quite a bit of despair, honestly.

The contrast couldn’t be greater when I did experience exactly one near-perfect day last week and saw nothing about it in the staff’s records. When telling my staff about this, I got advised that maybe reading the log notes might not be a good idea after all. WTF?

It also looks like my staff are using my current mistrust, and the fact that I’ll likely develop trust in my staff very slowly, as an excuse not to have to improve my care. After all, yesterday my assigned staff said my level of trust is currently zero so any improvement is to be celebrated when I was calling him out on ways in which he and his coworkers are expecting too much of me.

Today, I had the intake interview for therapy at my care agency’s practice. I probably portrayed myself as an attention-seeking, childish, purposefully-dependent monster. The therapist who asked me the questions (there were two in the room, plus my home’s behavior specialist), kept repeating how feeling isn’t dangerous.

At one point, I was talking about how I sometimes trigger myself by looking up idealized care situations. She was like: “But you don’t need full-time one-on-one.”. I know. Then she went on to tell me that sometimes she feels bored and lonely when she’s at home alone, but nothing bad happens so she can stay home alone. She also told me I’m an adult. This somehow majorly triggered me and now I feel bad for being triggered because doesn’t that prove my former psychologist’s point of view? You know, the one who diagnosed me with dependent personality disorder and told me I needed a good kick in the behind to live independently?

Yet things did happen. I dropped my meds. I dropped glass on the floor. I fell of a kitchen stool. The housing association came by and told me I needed to pull away the weeds out of my backdoor path. And a thousand other things. None of these are serious things, except that I had no idea how to handle them so spiraled into panic. And there’s no point teaching me how to handle every tiny little situation that could go wrong. And for the record, sitting with the feelings won’t solve the problems either. Calling for help rather than spiraling into panic might have, but that didn’t seem to be her point. Besides, I cannot do that when I’m in a panic.

She did say that she doesn’t make decisions about my independence, but I feel very strongly like I am being asked to be the strong, independent, intellectual part of myself again.

The therapists ended up recommending a form of play therapy, but the play therapist who comes to the main institution is male and I’ll be alone with him. That’s not an option for me, honestly. They are going to look into finding me a female therapist. I hope they will, as the rest of what they recommended, though I did agree to go forward with it and have my first appt on April 3, seems a bit off. They recommended psychoeducation on emotions, which seemed to me a bit like dialectical behavior therapy light (I’d mentioned I’d done DBT unsuccessfully). They’ll also help me identify my triggers and make a timeline of significant life events or something. I’m not sure what relevance that would have, but oh well.

Currently, I’m trying to talk myself into being positive. This care home clearly won’t improve, so either I improve or my life stays the same. Which is mediocre. I do have my good days, but I’m pretty sure the staff are going to agree at the next team meeting that the staff’s less optimal care approach should be the default.

On my good days this past month, I did craft some earrings, a polymer clay unicorn and bird’s nest, as well as make delicious homemade chocolate fudge. This was awesome!

No Such Thing As “Minor” Trauma

Posted on by Astrid

Recently, there was a discussion online I participated in about what caused our complex PTSD. I mentioned emotional, mental and physical abuse, bullying, a few instances of sexual violation and medical trauma. Most others not only went into far more detail than I was comfortable, but also discussed traumatic experiences that seemed far worse compared to those I’d gone through. When I mentioned this, saying reading others’ stories made me feel as though my trauma was minor, someone else commented how there’s no such thing as “minor” trauma.

Indeed, if something was significant enough to have caused C-PTSD, it was traumatic, and this means it was major. I am reminded of something my spouse said at one point when I was seeing a potential new trauma therapist back in 2013 (who ended up rejecting me for reasons not related to me). I was doubting the reality of my trauma. To this, my spouse said that, in reality, something as “minor” as slipping on the bathroom floor, could be life-threatening, so in theory I could’ve developed PTSD from that. I didn’t and I didn’t develop PTSD from any of my countless other falls, but I might have. Of course, this is a bit far-fetched, and of course I couldn’t have developed complex PTSD from falling, but I hope my point is clear: it’s not always easy to distinguish between events that objectively speaking count as trauma and things that don’t.

There are trauma centers here in the Netherlands that adhere very strictly to criterion A (the presence of things that count as trauma, according to professionals) in DSM-5 for treating people with (C-)PTSD. I’m not sure I’d meet their criterion. I mean, yes, I did experience exactly one potentially life-threatening medical event that I remember, when I was four. I was also hit quite regularly, but does that go beyond “tough love”? If it doesn’t, I’m pretty sure it doesn’t meet the trauma criterion for (C-)PTSD.

Then again, I’m not seeking to get into one of these centers. Tomorrow, I’ll have a get-to-know-me appointment with the care agency’s therapy practice. They haven’t yet decided whether they can help me or not. I hope they can, because right now I’m feeling rather hopeless.

#WeekendCoffeeShare (February 24, 2024)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare again this week. It’s the last Saturday of February and I honestly can’t wait for spring. How have you been? I’ve had my last cup of coffee for the day already, but I can still offer you something to drink if you’d like. Let’s catch up.

If we were having coffee, first I’d talk about the weather, as usual. I’m really disappointed in it this week. It’s been raining a lot and it’s been quite cold. On Thursday, another storm even raged by and management decided we weren’t allowed to go outside. This was in light of the situation in which a staff member died last December from being hit by a falling tree while going out in a storm. I want sunshine, for goodness’ sake!

If we were having coffee, then I’d tell you that obviously I haven’t been all that active lately. I think I only met my movement goal on my Apple Watch three times tops this week.

I might go swimming soon though. My assigned staff told me they found a spot for me to go into the pool on Thursdays. However, I’d need a staff to actually accompany me in the water, because I won’t be able to follow instructions when shouted from the side and there will be other clients in the pool too. If there’s no staff available who’s willing to come into the water with me, he said we could do fitness instead. There’s some gym equipment on grounds here, but there won’t be an instructor there. I’m fine with this, since I know how to work most equipment or my staff will be able to figure it out.

If we were having coffee, I’d share that I did have quite a productive week in the crafty department though. I made a polymer clay unicorn (yes, another one) on Tuesday. I didn’t do it fully independently, but that’s okay. I did add wings to this one, as well as Hotfix stones below each wing.

I also made a bird’s nest out of polymer clay on Thursday. That one is still waiting for more projects to join it so that I have more things to put into the oven together.

If we were having coffee, lastly I’d tell you that my support coordinator came back to me on Monday after talking to the behavior specialist. My emotional functioning won’t be re-assessed until June at the earliest and my day schedule won’t change until after the summer at the earliest. At the end of our discussion, she gave in on the day schedule and said she’d discuss it in the team meeting. I honestly don’t really care about the day schedule as much. I mean, it’s not perfect, but no day schedule is going to be perfect. What I do care about, is to lessen the chaos of my care. I mean, I know it’s better than it used to be at the intensive support home and I probably sound like a Very Hungry Caterpillar if I request more accommodations. I said as much to my support coordinator, but she tried to validate me by saying my attitude stems from my trauma.

The fact that there’s no designated one-on-one shift, however, has a lot of drawbacks and not just the fact that I get confused about who’s going to show up each support moment. It’s frustrating also because only the staff who works until handover, writes the day’s logs and those usually aren’t the staff members supporting me. I do, for this reason, notice a lot of irrelevant logging and, last Thursday, when I had a near-perfect day, there weren’t any notes at all. I think my staff probably hate me comparing my situation to the one in Raalte, but there, my designated one-on-one had fifteen minutes at the start of their shift to read the previous days’ log notes and fifteen minutes at the end to write up theirs. This meant I didn’t have to explain everything half a dozen times, like I do now. I also feel like having a designated shift would mean I could be much more clear on what I am going to do, lessening the mere talking and increasing the actual activity. I see why, if I keep rambling to a staff member for all of my activity time slot, they won’t want to spend another time slot with me, but I don’t like to spend all of my activity time rambling about the same issues either. The only reason I do is because I can’t count on getting it across.

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.