Gratitude List (March 9, 2024) #TToT

Posted on by Astrid

Hi everyone. This past week has been tough. I was going to write an update only to realize there’s no #WeekendCoffeeShare this week. I could do one on my own, but that’d just leave room for endless negativity. Instead, for this reason, I’m going to turn things around and do a gratitude post. As usual, I’m joining Ten Things of Thankful. I’m going to cheat a little and do this gratitude list for the past ten days so that I can provide a little update anyway.

1. I’m grateful for the night nurse on duty during the night of February 29/March 1. Like I said on February 29, I was intensely triggered by my intake interview for therapy. Though I tried to calm myself down, it didn’t work and I ended up self-harming after my staff had left by throwing boiling hot water over my leg. Thanks to the night staff and particularly the night nurse, who cooled the wound under the shower for over half an hour, I am left with superficial second-degree burns. The wounds still cover most of the front side of my upper leg, but I realize things could’ve been a lot worse.

2. I am grateful my wounds are healing as well as can be expected. I’m getting them dressed once a day now, which is frustrating and sometimes very painful. I looked up my kind of burn (that’s how I found out there are two kinds of second-degree burns) and it usually heals within two weeks. Yay!

3. I am grateful for French fries on Sunday. As I couldn’t walk on Sunday (or most of this week, for that matter) because the band-aid that was on my leg would fall off if I did, I decided that my spouse shouldn’t come by for a visit. Instead, my staff took me to the institution cafeteria in a wheelchair to have fries and some snacks. They were delicious!

4. I am grateful for nice weather last week Sunday as well as over the past couple days. Last Sunday, the daytime temperature rose to 15°C. When having the fries I mentioned above, we sat in the cafeteria yard.

5. I am grateful I am feeling slightly better mentally. I definitely hit rock bottom on February 29 and from that place, you can only go up. I will have to see how things work out in the long run, as the behavior specialist is going to try to talk to the therapist I met on Feb 29 to see whether any changes to the plan need to be made. Though I’m ready to give it a try, particularly the thought of doing the therapy without the support of my staff, feels overwhelming.

6. I am grateful that my support coordinator listened to me when discussing the outcome of the monthly team meeting with me. The team meeting was on Monday and, though I had already asked that some things would be discussed, such as my day schedule, my self-harm made things a priority. The day schedule isn’t changing, as I expected, but I honestly don’t mind as much.

Initially, in the team meeting, the staff had agreed to stick with announcing staff switches half an hour in advance. I was really disappointed. Though I understand the staff don’t want to designate a one-on-one shift, I feel it will help me immensely if I know more in advance who’s going to support me for my activity slots. I am grateful my support coordinator reluctantly agreed to this.

7. I am grateful my support coordinator reassured me that she and the behavior specialist at least aren’t planning on asking for less one-on-one for me anytime soon. Of course, they aren’t the ones making those decisions, but then again neither is the therapist I met last week.

8. I am grateful I did manage a few crafty endeavors over the past week. Not as many as I’d hoped, but I did craft yet another polymer clay unicorn, as well as finally making the crocodile I’d promised one of the male staff here. He actually helped me make it. It’s maybe a little too cute, but oh well.

Polymer Clay Crocodile

9. I am grateful my spouse came by for a visit today. We sat in my room talking, playing a card game and such, as I still didn’t feel comfortable going out.

10. I am grateful for the few short (as in, fifteen minutes tops) walks I did manage over the past few days. It’s been a pain f(sometimes literally) inding the right band-aids and other things to go over the wound. Let’s hope Dr. Google is right and my wound heals within the expected timeframe of two weeks.

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!

I Am (Not!) 154

Posted on by Astrid

Hi all. Today’s topic for Friday Faithfuls is IQ testing. This topic is very dear to my heart, as IQ tests have often been used and even more often misused to determine my entire life path.

When I was twelve, I had an IQ test administered to me. It was the verbal half of the Wechsler intelligence scale for children (the performance half can’t be administered to me because of my blindness). On this verbal IQ test, I got an overall score of 154. According to the educational psychologist writing the report, this is a sign of giftedness.

There were several problems with this assigned IQ score. For one thing, like I said, it’s just a verbal IQ score. The year prior, another ed psych had tried an intelligence test for visually impaired children which utilizes non-verbal components, but had given up on the test midway through because I got too frustrated. This ed psych had also administered the verbal half of the Wechsler scale, but her report doesn’t give an IQ number.

Another thing, which you might figure out from my previous paragraph, is the possibility of a retest effect, since I took the exact same test twice in a year. The ed psych that labeled me with an IQ of 154 did try to find out whether this had actually happened. He asked me whether I had been told when taking the test the last time which answers were correct and which weren’t. I had, in fact, with some, and besides, my father had given me extensive advice on how to answer some questions even more cleverly than I had done. However, I knew the purpose of this assessment: to get the green light for me to go into mainstream, high level secondary education rather than special ed for the blind. I wasn’t at the time really sure whether that’s what I wanted, but my parents did and I, being twelve, didn’t question their authority. So I said “no” and the ed psych concluded there was no retest effect.

I don’t doubt that I have an above-average verbal IQ. But 154, in my opinion, is probably too high. Besides, verbal intelligence is what you need to succeed in traditional schoolwork. What you need to succeed in life, is more related to performance IQ, if you ask me.

Even now though, nearly a quarter of a century later, the number 154 pops up here and there and everywhere with regards to me. Professionals keep assigning new dates to the original IQ score, calling it a total rather than verbal IQ, and making more nonsense out of these ever-intriguing three digits.

I have tried to talk to the behavior specialist about this. What I really want is to be re-evaluated. Not just with respect to (verbal) IQ, but with respect to other things too. She for now only agreed to write a note by the IQ score of 154 saying that it dates back 25 years.

You’d assume that, in intellectual disability services, it wouldn’t matter whether your IQ is 100 or 150, since it means no intellectual disability regardless. However, several of my current staff have admitted being wowed at my IQ score before they got to know me. I hate that the most, being reduced to being 154.

November 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the end of November, so I am joining #WBOYC and reflecting on the past month. Can you believe we’re almost in 2024? Ten more years and everything will be okay, as I always say (or WWIII will be started, as the book I used for inspiration for that claim says). Anyway, let’s wrap up November.

It started with the meeting on how I’ve been adjusting to my current care home on November 6. This meeting went okay. At first, I was a bit disappointed in my assigned staff’s attitude. I honestly still am to an extent. However, I’m trying to believe the staff are doing their best to help me.

The new application for one-on-one support was sent out the following week. I only heard some superficial bits and pieces of what went onto it, so I’m still very much stressed out about the possible outcome. It doesn’t help that my now old day schedule was used as a reference to base my necessary hours upon, which I’m pretty sure the Care Office are going to be very critical of, as was I.

Thankfully, at least for another 31 days, I’ll now have my revised day schedule. It started on Monday and I’m thrilled about it. Please, all pray or send out positive vibes or whatever you do for the necessary one-on-one to be approved for next year too.

I also worked on my crisis signaling plan with my assigned staff. This led to a major surprise, and not a good one: it turned out my original support coordinator from the intensive support home had significantly changed my plan without my knowledge or consent. I knew right as my assigned staff read me what staff are supposed to do when I’m asleep (the first phase talked about in the plan) during the day, ie. let me sleep and wait for me to leave my room rather than check on me periodically. Since my former support coordinator hadn’t altered the date and names of the people writing the plan, it still looked as though my staff from the care home in Raalte had written it though. I however was adamant that this was not the plan I’d agreed upon.

My assigned staff initially tried to dissuade me from focusing on this and seemed to disbelieve me, until I went and fetched the manila folder I had with my old day schedule and, yep, my old plan from Raalte. He tried to tell me they looked similar, but this was only when referring to the signs of the different phases, not the staff’s expected actions.

Unfortunately, my old support coordinator no longer works for this care agency, or I’d have filed a complaint against her. Oh well, my current assigned staff erased the evidence by editing the name and date to his and November 2023 and saving the document, after we’d indeed worked some on it. I am honestly extremely mistrusting of everyone here now that I know of this. I mean, all staff say that this home isn’t the intensive support home, but how do I know it’s different?

In the creative department, I haven’t really been as active as I’d have liked, but I did okay. I crafted a gnome out of polymer clay and most recently a Santa, both without the use of a tutorial. I also wrote some creative pieces, which I intend to do more of in December and in the new year.

Health-wise, I wasn’t as good to myself as I could’ve been. I really snacked far too much. The thing is, I still didn’t gain any weight, and am currently at the lowest point I agreed upon with my dietitian, weighing 56kg. It wasn’t that I over-exercised either, as I didn’t meet my movement goal on my Apple Watch several times this past month (and my movement goal is only 300 active calories, so you know).

I finally did get my support coordinator’s attention re the possibility that I might be experiencing cognitive decline. She’s going to ask the behavior specialist for some screening instruments for self-help skills or whatever. Sadly, these haven’t been administered to me before, so this is going to be my baseline really.

#WeekendCoffeeShare (November 18, 2023)

Posted on by Astrid

Hi everyone. I have barely touched the blog lately, but it’s not because I’ve been uninspired. Rather, I’ve mostly been doing other things online. Before I abandon it altogether, I thought I’d write a post though. I’m joining in with #WeekendCoffeeShare. I’ve had my last cup of coffee for the day, but thankfully my assigned staff ordered my favorite soft drink, apple and peach-flavored Dubbelfrisss, so I’ll have that in a bit. If you’d like one too, join me. 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 raining all day today and, though we were supposed to have a daytime high of 12°C, I don’t know when that was supposed to have been the case as it’s been around 7°C each time I looked at the weather on my Apple Watch. I haven’t been outside at all. I mean, I can bear the cold, but rain, yuck! I can tolerate it when it starts raining midway through a walk, but when it rains as I leave the house, I usually turn right around. Consequently, I didn’t meet my movement goal on my Apple Watch today at all. In fact, I’m pretty sure I hit an all-time low, but frankly, I don’t care.

The rest of the week, though we had some rain, it wasn’t constantly pouring. Though some days I needed to get out my winter coat, most days the daytime temperature wasn’t too cold either.

If we were having coffee, I’d cheat a little and tell you all about the meeting I had last week with my assigned staff, support coordinator, behavior specialist and my mother-in-law. Okay, who said you can only talk about the past week during a weekend coffee share? Maybe I did. Anyway, the meeting started out with my assigned staff complimenting me on how I do accept men and unfamiliar staff now. This rubbed me the wrong way, as the day prior he’d pretty much given me no choice, so what was I to do? I’ll see tomorrow whether they’ll go the full length and assign me a male staff for my ADLs (which is a big no for me), as then the female staff who normally always assigns me temp workers is working the morning shift with a male temp worker. Said temp worker is familiar with everyone here, but I am honestly quite sure she’s going to assign him to me for my morning routine anyway. Let me just say I’m going to throw a big hissy fit if this happens.

Other than that, the meeting went okay. We talked about my day schedule, which is okay in terms of how many hours of support I get but far from ideal in terms of how it’s cut up into small blocks. Since my ExtraCare (one-on-one) funding hasn’t been approved yet for next year, we’re waiting to see what happens to that to change anything. I’m pretty fearful the Care Office doesn’t consider every single moment the staff spend with me as ExtraCare, as, well, it isn’t, but the manager does. Oh well, we’ll see.

We also talked about my wish to start therapy again for my trauma-related symptoms. Upon further thought, I realized I need to work on stabilizing first before I start EMDR or whatnot. The behavior specialist is going to write an application. I am also going to work with my assigned staff on my signaling plan, which details how I can best be supported during each phase of emotional (dys)regulation.

If we were having coffee, lastly I’d share about my dietitian’s appt on Wednesday. It went pretty well. I am currently at a healthy weight and within the weight range I agreed upon with her. She did finally admit she doesn’t know why I’m not gaining weight when I’m having quite a lot of food in excess of my food plan. I honestly currently have far too many other things on my mind to care about this too. I mean, yes, I’m scared, but I’m scared for a lot of other reasons too.

How have you been?

Gratitude List (September 29, 2023) #TToT

Posted on by Astrid

Hi everyone. This week has been tough, but there’s light at the end of the tunnel. Let me share a gratitude list. As usual, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful for warm and cozy pajamas. They’re probably a size too big and the sleeves and legs are too long, but they’re really snuggly.

2. I’m grateful for warm enough weather that I can still wear short-sleeved shirts during the day.

3. I am grateful for the care home’s side-by-side bike. Unlike my previous care home, the new one has its own side-by-side bike for all residents to use. At my previous care home, one fellow client had one and, though I could occasionally borrow it, that didn’t always feel right. Besides, she is significantly taller than me, so her bike was too large for me. So was the side-by-side bike we sometimes borrowed for my physical therapy. I am, for this reason, grateful my current care home’s side-by-side bike can be adjusted to fit my size.

4. I am grateful for speculoos (known as Biscoff in the United States if I’m correct). I have been enjoying this a lot lately. Which reminds me, I need to locate the recipe for Biscoff brownies I once saw on Reddit.

5. I am grateful for sleep. With the exception of last night, I slept quite well here at the new care home most nights.

6. I am grateful for a productive dietitian’s appt on Wednesday. I am sort of grateful for my weight. I say “sort of” because it’s within the healthy range but lower than my and my dietitian’s agreed-upon lower weight goal. Honestly, there are really just two voices competing in my head: one that says this weight is still healthy so scriew my goals and let’s lose more, and one that worries that something medical is going on because I am not restricting at all.

7. I am grateful my staff aren’t really pushing me to be in the living room more. I am also grateful that I can be there sometimes.

8. I am grateful my staff listen to my concerns about the cuts to my one-on-one support and are trying to make things work as best as they can.

9. I am grateful my old home’s behavior specialist also took my and my mother-in-law’s concerns seriously and is going to inform my current home’s behavior specialist.

10. Most of all, I am grateful for a new day schedule. This looks surprising in light of my previous two points, but hear me out. After both me and the staff raising our concerns, my one-on-one was for now raised back to the level it was at my previous care home. This does apparently mean the care home get less money than they spend on me. I for now dropped my wish to actually see the financial paperwork in detail and will stop moaning about how my previous care home cut my budget and blamed the home in Raalte, which after all is as much a theory as the home in Raalte having spent money they didn’t have. Anyway, with my one-on-one back to the old level, my new assigned staff designed an even slightly better day schedule for me than the one at my previous care home. I now will have a 75-minute activity time slot in the afternoon. This should be enough for a medium-level (for me) polymer clay project. Or for baking the aforementioned Biscoff brownies.

Decisions Made for Me

Posted on by Astrid

Hi all. I’m joining Denyse’s #WWandPics once again. This week, she talks about the letter D words that relate to her, among which “decisions”. I wanted to write about decisions too, but this time, about the reality of decisions being made for you. This may not happen to non-disabled adults much, but it happens to me all the time.

Like with my upcoming move. I know next to nothing about my future care home and, when I told my assigned staff that this frustrates me, she pointed out that I’ll move there anyway so how would giving me more info help?

Honestly, I wish I were given some way to have any level of input into the process. I know the reason the powers-that-be have decided to give me no choice is probably because they feel I’m too critical anyway. They believe I’m looking for the perfect home, which they and I know doesn’t exist given my rather complicated care needs.

They always tell me that I wanted to leave the care facility in Raalte, which was near-perfect compared to my current one. I did, in a way. That is, I wanted to have a discussion with the behavior specialist to explore the possibility of me finding another care home. That’s not the same. And they were the ones not being up front with me about all the things I’d lose if I wanted to live on institution grounds and have fellow clients with whom I could speak. They may’ve technically allowed me to make the decision to move here, but they gave me the bare minimum amount of information to make that decision.

Now they’re not letting me make a decision at all. It makes me feel intensely powerless and that’s a really distressing feeling. And who will be in trouble if my behavior doesn’t improve? Yup, me. Some staff have come to call me spoiled, in fact, so the burden is on me to show them I can handle whatever this new home has to offer. If I can’t, well, too bad, then I either have to learn to live with the decisions made for me or find myself another way to cope.

July 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means it’s time for my monthly reflections. As usual, I’m joining in with What’s Been on Your Calendar? (or #WBOYC for short).

This month was a toughie once again. All I had to keep me going was an E-mail from the behavior specialist at the end of June saying that they were still investigating a possible new home for me, so I hadn’t been forgotten. This didn’t do much to perk me up, honestly. At the beginning of the second week of the month, my mother-in-law E-mailed her to request extra supports. We had been discussing her asking the behavior specialist to come round to talk to me every once in a while to keep me from spiraling further into crisis before, and in fact my mother-in-law had requested it before, but that message had not been responded to. This time around, it turned out the behavior specialist was on vacation till the end of the month. I’m pretty sure given her work schedule, she should be back tomorrow, but even though our E-mail was sent pretty early in her leave, I’m skeptical that she’ll respond then.

Of course, I did find out on the 23rd that a new home has been found for me. Like I mentioned last week, the way I found out about it was rather weird and I don’t know anything about the home other than what my care agency has on its website about it. A moving date hasn’t been set either as far as I’m aware and I won’t be informed till about two weeks in advance. My assigned staff asked me today whether I keep wondering when I’ll be moving. Yep, of course.

In other news, my support coordinator did leave the agency a few weeks ago. I can’t say I miss her, as I can talk to my new one much more easily. Still, I’m glad I’m leaving this place in the hopefully not too distant future.

I haven’t really been crafting much over this past month. The only thing I finished, in fact, is a bracelet with the glass beads I got from my mother-in-law for my birthday. Today, I did finally get round to claying once again. And got my hands all blue from handling alcohol inks without gloves.

I also didn’t walk as much as I did last month over this past month. I honestly don’t really care though.

Since iOS 16.6 resolved the Braille display bug that caused me to be unable to read books on my iPhone, I have been reading more over the past week. I also finally bought a blender, so yay for smoothies!

Here’s hoping August will be a better month than the past few months have been.

Gratitude List (July 20, 2023)

Posted on by Astrid

Hi everyone. I’m feeling like I have really been neglecting my blog. The truth is I’ve been struggling a lot, more so even than I used to. However, today I’m feeling pretty good so I’m taking the opportunity for a gratitude post. Here goes.

1. I am grateful for a fellow resident’s birthday celebration on Monday. Just after handover at 3PM, we all sat in the living room and sang “Happy Birthday” for him. We had fries and a snack for dinner too. Unfortunately, another resident did have a severe anger outburst right after we did the singing and was disruptive for the rest of the evening even when in his room.

2. I am grateful that, though on Tuesday I got the least familiar to the group staff assigned to me for my one-on-one, she was not the least familiar to me.

3. I am grateful for a comforting visit from my mother-in-law on Tuesday. It was good to be able to vent to her.

4. I am grateful for a delicious caramel ice cream bowl that my mother-in-law treated me to on her visit. Okay, my dress once again had ice cream and caramel sauce all over it, but oh well, it can be washed.

5. I am grateful for a satisfying dietitian’s appt on Wednesday. She was really content with my weight (which remains within the agreed-upon range) and my eating and exercising habits. For those who don’t know, I have a history of disordered eating, bordering on bulimia, so I particularly need to make sure my eating and exercising don’t become compulsive (in addition to not engaging in purging behaviors, of course).

6. I am grateful my assigned staff supported me for part of the morning shift on Wednesday despite there being a temp worker too. Granted, the temp worker is quite familiar with the group, but I’d more or less been told that I’d still be assigned the temp worker by default unless there are literally four regular employees.

7. I am grateful for a great experience swimming yesterday. I went into the pool with just a staff and no other residents. This particular staff has this really cool way of getting my playful inner child out, so we sang songs, jumped up and down and had lots of fun.

8. I am grateful my assigned staff agreed to contact the behavior specialist once she’s back from vacation to set up a meeting to discuss possibly finding me help in overcoming my sense of basic mistrust. It’s been getting progressively worse and is affecting my life here at the care home but also my marriage.

9. I am grateful I was allowed to borrow a fellow resident’s side-by-side bike this afternoon. It was a nice change from walking.

10. I am grateful for my spouse, who sticks by me even though I’m being quite difficult. We’ve had a few arguments and I’ve crossed my spouse’s limits a few times. I now realize this is probably my anxious attachment style getting in the way of our healthy communication. For this reason, I’m all the happier to still be going on together.

What have you been grateful for lately?

#WeekendCoffeeShare (June 3, 2023)

Posted on by Astrid

Hi everyone on this first Saturday evening of June. I’m really motivated to write another blog post, so am joining in with #WeekendCoffeeShare. I’ve had all my coffee for the day. In fact, the other residents didn’t even want their evening coffee, so the staff made a cup of Senseo for me. I still probably need to drink some water, so if you’d like a glass of water too, that’s totally cool. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d share about the weather. It’s mostly been quite good, though not summerlike yet. The mornings in fact have been quite cold, but in the afternoons, it’s often warmed up to about 20°C.

If we were having coffee, I’d post pictures of the polymer clay unicorn with wings I created a few weeks ago. Although the glitter on its wings drooped a bit (or a lot), I think it turned out quite lovely overall.



If we were having coffee, lastly I’d tell you all about the meeting with the two behavior specialists – my own and one responsible for a potential new care home (or maybe several, they were deliberately vague) here on institution grounds – I had on Tuesday. Like I might’ve said last week, my assigned staff did mention a few care homes she’d heard about, but she wasn’t sure either and probably didn’t realize I wasn’t supposed to know. I obviously googled these care homes and also ran them by someone I know online who offered to help me prepare for the meeting. She also read the info the website provides on my current care home and concluded that it’s probably all “window dressing”, ie. the care agency trying to make a good impression on their site without giving much info away. She recommended I focus my points in the meeting on what’s important to me in staff attitude.

So that’s what I did. I told the behavior specialists that, regardless of what type of home I’ll move into, it’ll never be a perfect fit because there just aren’t enough people with similar needs to mine in the Netherlands. Therefore, what’s important to me is staff being willing and able to get to know me and accommodate to my needs without constantly shoving “how this home works” in my face. Of course, I did say I’ll need to adapt in some ways, but constantly needing to adapt to “how this home works” in every single way isn’t working for me. I explained that I’m significantly overestimated here at my current care home. I also explained that, while the staff have made some moves in my direction eventually, them majorly shoving “how this home works”in my face during the first few months significantly diminished my trust in them.

They asked a few specific questions, but mostly just listened to me. I hope something will come out of this.