#WeekendCoffeeShare (November 16, 2024)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare again. It’s nearly 9PM, so no coffee for me. I might make myself a cup of bedtime tea once I’m done with this post (or rather, have the staff make it for me). There’s of course always water too. Let’s chat.

If we were having coffee, first I’d talk about the weather. We’re still having an unusually mild fall season, with daytime temperatures at or around 10°C all week. We were supposed to get rain today, but I haven’t felt any.

If we were having coffee, I’d tell you I’m still struggling, but not as much as I was last week. On Tuesday, I spoke with my support coordinator and explained why I felt the Center for Consultation and Expertise may be able to help. She didn’t really respond, but I’m hoping she’ll take things up with the higher-ups.

If we were having coffee, next I’d tell you I’ve been learning more about autism and ways to support myself and for my staff to support me. There’s this support method called The Essential 5 in English. It was originally developed here in the Netherlands by Colette de Bruin and here has the catchy name “Geef me de 5” (which translates to high-five in English). I hadn’t ever remembered the essential five correctly, but they’re ways in which one’s activity should be structured: What, When, Where, Who and How. If there’s no “What”, as in my day schedule’s “alone time” or even during my supported activities (because I have to choose one on the spot), how can the other four be clear? This is something I struggle with a lot, as now with the shifts assigned to my day schedule, the “Who” is often too rigidly clear but there’s still no “What”.

I listened to a podcast episode by Geef me de 5 on empty time and autism and had a staff listen to it with me too. It was very eye-opening.

If we were having coffee, then I’d tell you that, on Tuesday, I went to me and my spouse’s house for my spouse’s birthday. We also stopped by Ikea and my in-laws’ house. We originally wanted to order pizza or fries, but both the pizza place and the snack corner were closed. My spouse eventually put fries into the Airfryer.

I also took a few things from our house back with me to the institution. First were a number of mounted rubber stamps I used to use for card making. I’m not 100% sure what to do with them now, particularly since most have old ink on/in them, but, if I can clean them, I can re-use them for stamping on polymer clay.

Then I also took a jewelry box with me that contained a number of rings, bracelets and necklaces. One of them was the ring with an amethyst in it that was passed down to me from my late grandma. Unfortunately, that one, as well as most other rings, are too big for me.

If we were having coffee, I’d share I have a ton of creative ideas floating around in my mind, but struggle to get to actually starting any of them. For example, I want to start making my own jewelry again, particularly bracelets and necklaces. I am still in doubt as to whether earrings are suited for me at all, as sooner or later I’ll almost inevitably develop an itch from them.

Anyway, I remember how I used to enjoy making jewelry and I think that with my current day schedule and staff, I should be able to pick the hobby up again.

So far, I did create one polymer clay pendant. I think I like it quite a lot, but still need to sand it before I can actually use it.

If we were having coffee, lastly I’d share a nutrition and exercise update. I saw the dietitian on Wednesday and endured the mandatory talk about all the opportunities to snack and get treats during the holiday season. Quite frankly, if I’m in the mood for snacking, I don’t care whether there’s a festive reason for it. I’m also happy to report I’m still on target weight-wise and intend to keep it this way.

However, I haven’t been all that physically active over the past week. I did meet my goals on my Apple Watch, but things could’ve been better. On Thursday, I had an opportunity to go swimming, but I felt too tired. I now remember that I was supposed to do my physical therapy exercises this afternoon but forgot. Going to do those now!

#WeekendCoffeeShare (November 9, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I apologize for not having commented on anyone else’s posts last week. As I write this, it’s 5:15PM, so I’ve just had dinner. I won’t have my next cup of coffee until 7PM, but at least I’m not writing that it’s too late at night for coffee for me. Let’s have a drink and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s quite chilly, though most days the daytime high is still above normal. Most days, it’s been around 10°C, but yesterday the temperature didn’t climb above 6°C. We haven’t had more than a slight drizzle of rain.

If we were having coffee, I’d share that I’ve been doing okay in the health and wellness department. I walked everyday, though not as far as I’d have liked. I also downloaded the FitOn app onto my iPhone and did a workout on it yesterday. My eating has been okay and I lost half a kilogram over the past week. Sleep has been all over the place though.

If we were having coffee, next I’d share that this week has been tough. You might remember that I shared several months ago about the improvements to my care that would take effect in mid-October. Some did happen indeed, while others didn’t and the end result is that my quality of life isn’t improving.

Part of the problem is the fact that half the team rigidly shove the new rules down my throat and the rest do as they please regardless of what my new day schedule says. For example, in my new day schedule, there are now shift codes assigned to times my staff are with me, so that it’s hopefully clearer for everyone who will be supporting me. Some staff have been rigidly following the rules, while others changed things up, sometimes at the last moment. Most staff also don’t tell me who has which shift a day in advance, yet when I am supported by a staff one day who rigidly follows the rules, they’ll tell me that so-and-so will be supporting me half an hour in advance and not care that I didn’t know the day before because their coworker didn’t tell me. And they’re unwilling to change things up because the day schedule says they can’t. This means I’ve had to deal with new-to-me temp workers three times this week and, at least once, I wasn’t told the day before that they’d be supporting me. This led to me having an outburst and telling my staff that I didn’t want the temp worker. I wasn’t demanding someone else, for clarity’s sake, but the temp worker refused to leave me alone too, despite the fact that I’m not under involuntary care.

There were other things discussed at the meeting that these rules were decided at, but I don’t see these being implemented at all. For this reason, my trust in my support coordinator and behavior specialist has suffered again.

If we were having coffee, finally I’d share that I had a phone appt with an independent client supporter on Tuesday. This appt had been on the calendar for months and I originally intended to say it’s all fine here and to close my file at her agency. That’s not how it went: I was honest that, while I do see my staff have good intentions, it’s still proving hard to figure out the care I need and to make it work with the way the home works. She recommended involving the Center for Consultation and Expertise (CCE) again. This is an organization that helps care agencies and clients when they’re stuck.

I have mixed feelings about this. On the one hand, I am hopeful that an external organization can shed new light onto the situation or, if not, I’m able to accept that my home are doing all they can. On the other hand, I feel slightly guilty for not being able to suck it up when things seemed so positive at the meeting. Hope is the dominant feeling though.

#WeekendCoffeeShare (November 2, 2024)

Posted on by Astrid

Hi everyone on this first Saturday of November. I’m joining #WeekendCoffeeShare today. Can I offer you a drink? Let’s catch up.

If we were having coffee, first I’d talk about the weather. The daytime temperatures have been between 13°C and 16°C this week. We got a little rain here and there, but for the upcoming week, no rain is in the forecast. Daylight saving time also ended last week, so it’s now dark by 5:30PM. If you know me, you know I seriously hate this with a passion.

If we were having coffee, I’d tell you that I haven’t been walking nearly as much as I’d have liked. I didn’t even close my activity rings on my Apple Watch each time this week. Yesterday and today have been quite good though. I signed up for a month-long challenge in the Challenges app, but I honestly don’t think I’m as interested in it as I was the last few times I participated.

On Thursday, I wanted to go swimming, but we arrived at the institution pool only to find out it was closed.

If we were having coffee, I’d share that, as regular readers of my blog know, this time of year is hard for me. Today marks 17 years since my major mental breakdown. I could try to reclaim the month by creating positive memories, but the last time I wanted to do this, I couldn’t make it last beyond that one November. I’m fully intending to stay at my current home for a long while and I can see my staff fully intend to help me in this process, but then again intentions aren’t enough.

If we were having coffee, I’d expand on this further by saying I’ve been quite a pain in the butts of my staff lately. I can honestly see why: I’m (subconsciously) pushing their limits because I think (know?) that, when I’m truly myself, they’ll kick me out. Knowing that abandonment feels safe to me because it’s what I know, unfortunately doesn’t make it any easier to change my actual actions, because when I’m dysregulated, I don’t realize I’m projecting my own fears onto my staff.

If we were having coffee, lastly though I’d tell you about the positive aspects of the past week. Firstly, I went to markets twice this week. Secondly, I tried my hand at creating a little Christmas wreath out of polymer clay. I’m not one to plan my crafty endeavors and in fact I have the snowman I crafted nearly two years ago on display year-round. I really hope to craft a few more little decorations before Christmas truly starts in early December.

#WeekendCoffeeShare (October 12, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s nearly 9PM, so long past my last coffee break for the day. However, I’d be happy to pass you a virtual mug of your favorite beverage. My spouse is in search for pumpkin spice latte. Since my blog readership is mostly international, I doubt anyone could recommend a place to find it tomorrow local to here and my spouse can do a Google search too. Anyway, let’s have a drink and let’s chat.

If we were having coffee, I’d start by sharing about the weather. It’s been quite cool with daytime temps below 15°C most days. Today, the daytime high was as low as 12°C. Brrrr! We’ve also had some rain, though none today or yesterday. Next week, we’re supposed to get one day with a daytime temperature of 21°C. Sadly, rain is in the forecast then too.

If we were having coffee, I’d share that, this week, I did okay with my exercise. I didn’t meet my goal everyday, but I don’t care.

On Thursday, a staff and I were riding the side-by-side bike to a nearby town, so that I could pick up a package. (As regular readers of my blog know, package delivery to the institution is hit-or-miss, so I set up a pick-up point in the nearest town as my default delivery address with DHL.) The road leading directly to the town was under construction, so we headed another way. When we were in the next village, the bike got a flat tire. The staff called the home to have someone else pick me up by car and he himself walked to the care home with the bike. It’s really frustrating, because this bike had just had major repairs.

If we were having coffee, I’d share that I did pick up the package yesterday. When in that town, we noticed it was market day. We decided to get some fried fish. Then, when coming to another stand, we heard something about an offer by which, if you’d bought something from four vendors, you could draw a prize, like a voucher. We went back to the fish stand and asked for them to sign our card too. I visited the fish stand like I said, the veggie/fruit stand (where I bought raspberries and lemons), the nuts stand and the olive stand. I then went to draw the prize and it was a €5 voucher. I spent that on licorice. Of course, most food at farmer’s markets is more expensive than at the supermarket, but I love the experience. By the way, if anyone has any ideas for what to do with lemons, your suggestions are welcome. I thought many smoothies had fresh lemon juice in them, but only a teaspoon or so and I have six lemons.

If we were having coffee, I’d tell you that I did a lot of baking over the past week. On Tuesday, I tried baking cookies from a store-bought mixture, but those didn’t turn out good. I then decided to give cookie baking another try on Wednesday, making the cookies from scratch. That was much better! Finally, today, I baked a cake. Don’t tell my dietitian, as I’ve probably gained weight. Weight management can wait.

If we were having coffee, lastly I’d tell you that I got a new day schedule. It doesn’t look much different, but there are some significant improvements. For example, it’s now clear who will be supporting me during the day. The weekend schedule is also now the same as the weekday schedule. I haven’t yet read the schedule myself and, judging from what the staff are saying, it does need a few small tweaks. I’ll discuss this with my assigned staff soon.

Speaking of which, I got a new second assigned staff. I have had one staff as my assigned staff for a few months, but she only works one or two days a week. I now got one of the student staff as my secondary assigned staff. I think she’s quite good at her job despite just starting out.

How I Coped With Losing My “Job”

Posted on by Astrid

Hi everyone. This week, one of the prompts for Writer’s Workshop is to write an essay titled “How I coped with losing my job”. I don’t do well writing fictional essays and have never had a “real” job, in the sense of a paid position or even volunteer work. I did, however, once “lose my job”, in that I got told the day center I went to couldn’t keep me there anymore.

This happened sometime in January of 2018 at my first day center with my current care agency. They had had me there for eight months, in two different groups, but when I was struggling to cope at the second group, they could no longer serve me or so they said.

I felt really distressed about this. The most frustrating aspect was the fact that they blamed me for no longer being suited to the center, while in reality, three new clients had been accepted into my group and no additional staff had been hired. I remember the reason they said it was me being the problem, not the new clients, was the fact that I’d been having meltdowns shortly before they arrived. Now I know that any anticipated change will cause me distress and that doesn’t mean I’m just a problem client. However, in hindsight, I’m pretty sure they wanted me gone sooner rather than later all along, for the simple reason that I don’t have an intellectual disability.

Thankfully, I wasn’t told to leave on the spot, but got time to find a new place. I initially had no clue how to, but did remember that, in 2010, I had been helped by the Center for Consultation and Expertise (CCE). I told the staff that I wanted to involve them again.

This was a bit of a hassle, as my community psychiatric nurse from the mental health agency said I’m far too high-functioning for the CCE. I applied nonetheless and got an orientation meeting in May of 2018.

In the end, I didn’t need the CCE for finding a new day center, but the consultation was what led me to accept that living independently with my partner wasn’t working and I needed long-term care.

I did feel intensely frustrated, like I said, at being “fired” from this day center. However, in the end, I don’t blame the staff, who were just powerless in the face of my challenging behavior. I think the manager, who didn’t look beyond my psychiatric diagnoses, is partly responsible. So was the psychologist from the psychiatric hospital, who more or less made the manager accept me on partly false premises.

Friday Feels (October 4, 2024)

Posted on by Astrid

Hi everyone. I have a ton of ideas of what to write about floating in my mind, but because of this I struggle to pick one. I’m going with Deb’s Friday Feels. I loved coming up with an F word last time.

F word

My F word for this week is “fruit”. Like I mentioned earlier, I bought a slow juicer. My spouse cautioned me against using it daily because of the risk of microplastics getting into my juice, as the juicer is a Chinese brand. For this reason, I’ve only used it once so far and only juiced an apple.

I since discovered that I can do far more with my blender (which is safe to use according to my spouse) than I used to think. I mean, I have one book of smoothie recipes that has a ton of juice-based ones in it, like recipes for which you need carrot juice, blueberry nectar (which I found out is just sweetened, thickened blueberry juice), etc. I decided to look beyond this book, as I have many other books on the topic of smoothies and juicing.

Today, I made my first green smoothie. Of course, I didn’t use just greens, as that’d make the smoothie taste horrible. I used spinach, pineapple, banana and coconut water. I think this smoothie can compete with the smoothie I made a few weeks back that I said was my favorite. My fellow residents loved it too.

What made me happy?

I’m in a pretty good mood, but there’s little specifically that made me happy. Then again, being in a good space mentally is a good enough reason to be happy, in my opinion.

What made me sad?

Not sad per se. More like frustrated. A skin infection on my face. Thankfully, the staff finally saw that it needed treatment yesterday and the institution nurse agreed, so I now have a salve for it.

Oh, and the fact that the entire town was cut off from WiFi yesterday afternoon and it wasn’t solved until this morning. This is costing the institution lots of money, as the night staff rely on WiFi-connected technology to know when we need them, so now each home had to have its own night staff.

What made a difference?

Two things. First, my support coordinator is genuinely listening to me with regards to my struggles in play therapy and in general. I have this issue with being very much behind emotionally and I struggle with this, because sometimes I can explain the theory, but this doesn’t mean I can help myself in reality.

Another, somewhat related thing was the video interaction support I got on Tuesday. Then, it was just someone recording me and a staff interacting on video without any feedback, but I’m hopeful the staff will learn something by looking at the video at a later time.

#WeekendCoffeeShare (September 28, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again today. It’s nearly 10PM here, so no coffee for me. If you’d like some though, pour yourself a cup and let’s chat.

If we were having coffee, first I’d moan about the weather. I had to check back to last week’s coffee share to see if memory was serving me well, as I almost couldn’t believe the daytime high was above 20°C then. Today, the daytime high was only 14°C. It was raining all day yesterday and most of the day today too.

If we were having coffee, I’d tell you that, as a result of the rainy weather, I almost didn’t meet my movement goal on my Apple Watch yesterday. I was tempted to lower my goal for that day specifically, but my spouse convinced me that would be cheating. I then danced around my room for about 25 minutes so that at least I’d meet my goal. I didn’t meet my exercise goal, but that doesn’t count towards the perfect month award.

During most of the rest of the week, I didn’t walk much at
all either. On Thursday, however, I went swimming. This was great!

If we were having coffee, I’d share that I’ve also been quite fatigued lately. I’m probably starting to experience a touch of the seasonal blues.

If we were having coffee, I’d tell you that I had bloodwork on Monday. I had no idea why and in fact was convinced they got me mixed up with another client. Apparently not. However, I had already had breakfast and one of the things needing to be checked was glucose. I thought this would be problematic, but the nurse said it wasn’t. I finally found out the reason for the bloodwork yesterday: it was the fact that I’d been experiencing night sweats. I had long attributed those to the warmer weather, but then again they aren’t gone now (though they’ve lessened). Fingers crossed for all normal results.

If we were having coffee, I’d tell you that I had a meeting with my support coordinator, behavior specialist and mother-in-law on Monday. It was a bit difficult. Though I could see my support coordinator doing her best to help me, it was still quite hard to feel the limits of what she can do for me.

For example, I had been struggling with play therapy because a staff I don’t realy trust had been attending it with me. My support coordinator tried her best to find a somewhat trusted staff for me in the coming weeks but couldn’t, so I felt like giving in and accepting a staff I at least don’t feel bad about.

The next day, I had a candid conversation with my support coordinator. That was somewhat reassuring. Play therapy on Wednesday was still more or less useless.

If we were having coffee, I’d tell you that next week, I’ll be video-recorded in my interactions with a staff. The goal is for staff to look at the tiny signs that might lead to distress and things they can do or not do to help me.

If we were having coffee, I’d end on an upbeat note by saying I’ve been making a lot of smoothies lately. I don’t really have the energy for polymer clay or the like, but preparing a smoothie takes only five to ten minutes. I always create enough to share with at least some of my fellow clients and they truly appreciate it. My best one was a smoothie with pineapple, banana, coconut water and a pinch of cinnamon.

I also finally managed to make a delicious mug cake. I mean, the ones I made before were okay, but there was always something slightly off about them. The only thing about this one was the fact that I couldn’t wait for it too completely cool before consuming it. Otherwise, it was great!

Exploring “Safe Ground” in a Less Than Optimal Care System

Posted on by Astrid

I’ve been exploring the concept of “safe ground”. This is a buzzword in the long-term care sector, particularly in the care of people with severe challenging behavior. It is used to describe the idea that people are unconditionally accepted in their care homes and will not be kicked out for their behavior.

I’ve been feeling drawn to this idea, because I’ve been kicked out of services, or out of the particular service I used, for my behavior several times.

One video I watched on the topic of “safe ground” explored a care home for the most severely challenging individuals. As in, there are only 24 places in the entire country. I don’t know why I was drawn to this video, because I’m not nearly the most challenging resident on grounds here, let alone among the top 24 of the country. In fact, I would say that at least one of my fellow residents here at my home is more challenging than me.

There are two concepts to unpack here, which may or may not be related. The first is, why do I identify so strongly with the most difficult of clients in the care system when I’m probably somewhere in the middle? The second is, is “safe ground” only the idea that people won’t be kicked out for their behavior, or is it more generally speaking unconditional acceptance of clients with their unique needs?

I’ll explore the second concept now. I think “safe ground” means more than just not kicking out clients, and in this respect, it’s relevant to me. I think it means (or should mean) seeing the unmet needs behind challenging behavior. Seeing the person rather than the client. I still think that, even if I don’t end up being kicked out of here for my behavior, there’s still a world to win here. I am hopeful that, when the things we discussed a few weeks ago at the meeting between my support coordinator, behavior specialist and me, will be implemented, we’ll get close.

That being said, it’s still 2024 and this means no optimal care for anyone. I think one of the things I wish people would admit is that they’re having to deal with a strained system rather than blaming the client for their challenging behavior.

I ran into this yesterday, because there’s yet another change in staff hours, and yet the other support coordinator claimed everyone gets the attention they need. No, that’s not true, or it depends on how you define “need”. After all, most of us do mostly get our needs for physical care met, by which I mean we get dressed, showered and have something to eat. Most of us however are still routinely left to fend for ourselves when we’re struggling emotionally. I and the more challenging fellow client are the lucky exceptions to this rule. Even so, I would not call my care optimal. That isn’t going to happen and that’s sort of okay, but it makes a massive difference whether staff blame me or they blame the system. In other words, are we talking about things we as clients shouldn’t expect or things they cannot offer? The end result is the same, in that we have unmet care needs, but the latter is a lot more empathetic towards us.

Friday Feels (September 13, 2024)

Posted on by Astrid

Hi everyone. Today I’m participating in Friday Feels. The idea is to answer three questions about the past week and share an F word related to it. The questions are:


  1. What made me happy?

  2. What made me sad?

  3. What made a difference?

F word

My F word for this week is “fall”. Last Saturday, it looked like summer wasn’t going to end anytime soon, since the daytime temperature reached 27°C. From this past Monday on though, the weather’s been considerably chillier and rainier. On Wednesday, the temperature didn’t even get above 14°C. Today is slightly less chilly, but the nights are truly getting colder.

What made me happy?

First, Chinese takeout for dinner on Monday to celebrate a fellow client’s birthday.

Second, a treat of one of my favorite biscuits with my afternoon coffee today.

Third, the fact that I was able to get the WiFi on my iPhone to work properly again here. It turned out that turning off a privacy setting on my phone for this particular network, solved the issue.

Last but certainly not least, swimming! On Wednesday, I heard that two of my fellow residents were going swimming at the institution pool that evening. Usually, about seven or eight residents go and it’s too overwhelming for me, but since there was another activity too, just these two guys were going. I took up the courage to ask my staff whether I could go too. It was amazing!

What made me sad?

I experienced a slight increase in bad memories over the past week. Mostly, they were manageable, which is why I’m not using the word “flashback” to describe them.

What made a difference?

There are several things that made a difference this week. First, the fact that one of my trusted staff returned from vacation this week. Most are still on holiday, so the next few weeks will be somewhat difficult still, but I managed this week.

Second, the weather, like I said, is very different and it made a difference, in that I could sleep under my weighted blanket without sweating excessively. This is important, because until now I thought something might be wrong with me. I guess not.

Third, the new agreement that staff will no longer unlock the door for me when I want to elope and will physically restrain me if necessary to keep me from for instance climbing over the fence. I saw the agreement on Tuesday and, though I still have some questions about it, I am for the most part relieved about it.

Attention Is a Valid Human Need

Posted on by Astrid

Hi everyone. One of the prompts for this week’s Writer’s Workshop is to write a post based on the word “attention”.

This immediately brings back a flood of memories of my time at the intensive support home. On one particular occasion – but I’m pretty sure there were many more -, a staff said to her coworker about a client in crisis: “It’s all attention.” She said “attention” in English, not Dutch, apparently hoping the client in crisis or his fellow clients (including me) wouldn’t understand. One of my fellow clients immediately chimed in by translating her comment into Dutch.

The idea that challenging behavior is “for attention” is often not entirely based in truth. However, even if it is, attention is a valid human need. And especially at the intensive support home, clients routinely didn’t get it.

You might think we did get more than enough attention, since the staff/client ratio is 1:2 to 1:3 at this home. But more often than not, staff were doing stuff on their phones, chatting to each other and on at least one occasion, I caught two staff playing a board game together and the third cheering for them. That third person was my one-on-one for the moment, but, because I was also playing a game with a fellow client, the staff thought it not necessary to pay attention to me. Then when I started showing signs of distress, he missed them until I ended up in a meltdown, then told me I could’ve said in a calm voice that I wanted to go to my room. Well, guess what? One of my first signs of distress is an inability to communicate effectively.

On another occasion, the fellow client about whom the staff felt the need to communicate his “attention-seeking” in English, was having an outburst again. I told my one-on-one for the moment that I could see why, because he’d been left to his own resources, often locked in his room, for most of the day. My one-on-one told me he’d had more than enough attention, since he had been having a cup of coffee with the client and had created his day schedule. As if a fifteen-minute coffee chat means you can be left alone for the rest of the day.

Remember, I and my fellow clients have a developmental disability. Most of us cannot participate in everyday conversations among non-disabled people, so when the staff are chatting to each other, most of us will feel left out of the loop. And just because staff are in the same room with us, doesn’t mean they’re attending to our needs, as my example of the board game illustrates. At that point, I needed someone to pay attention to the subtle signs that I was going to land in a meltdown.

And like I said, attention is a normal human need. Staff aren’t telling each other that they’ve had more than enough attention because they’ve had a break (that usually lasts for 45 minutes, four times a day) together. In my opinion, honestly, they should.