My Hopes for 2025

Posted on by Astrid

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

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

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

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

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

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

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

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

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

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

What do you hope to achieve in 2025?

Crafting Lately (December 16, 2024)

Posted on by Astrid

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

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

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

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

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

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

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

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

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

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

Music Moves Me (December 9, 2024): Dancing Queen!

Posted on by Astrid

Hi everyone. I joined in with Music Moves Me many years ago and rediscovered it a few weeks back.

Guess what? On Saturday, one of the student staff had brought a Bluetooth speaker and he was blasting music in the other side of the home’s living room. One of the clients there knew the lyrics to every song. They were Dutch-language songs, none of which I knew, because that’s not my taste in music.

However, I at one point decided to move over there and request the staff put on a song I knew. The first band that came to mind was ABBA.

I and a few other clients were singing and dancing along and it was so much fun! The client who knew all the lyrics to the Dutch songs, sang along too.

We danced to a few more ABBA songs and then the staff asked us to name another artist or band. I came up with P!nk and mentioned her song Cover Me in Sunshine.

I honestly had no idea this song was a duet between P!nk and her daughter until I saw the music video list Willow Sage Hart and looked it up. I guess this makes me the most musically stupid person in the linky, but oh well. I just wanted to share that dancing made my evening. For this reason, I’m also joining in with Trent’s #WeeklySmile.

Several staff noticed how much fun we were having and they’re trying to get a Bluetooth speaker for the home. There’s a monthly dance event at the institution townhouse too, but that isn’t nearly as much fun.

The Most Important Life Lesson

Posted on by Astrid

Hi everyone. Today Sadje asks us in her Sunday Poser to share life lessons we’ve learned. I was pretty sure I’d done a post on the most important lesson I’d learned in life some years ago, so went to look and indeed, I wrote about this topic in 2018. Wow, how time has flown!

And it doesn’t surprise me that, when I read Sadje’s question, my initial thought was to share the exact same lesson I shared back then: that it’s important to stay true to yourself. Today though, I’m going to make it even bolder: I am the most important person in my life. That sounds selfish, right? But guess what? Each of us is the most important person in our own life. You can’t live for anyone else, by which I mean no-one else can make you happy. No, not even when you think that someone else does; it’s still your understanding of their love or acceptance that makes you happy.

To word it even more bluntly, if everyone thinks of themself first, no-one will be forgotten. This doesn’t mean we need to be going against moral sensibility or harming other people just because we want it. After all, harming others isn’t in our own best interest in the long run either.

By saying that no-one else can make us happy, I also didn’t mean we don’t need connections. However, no-one else can live our life for us.

I also want to share what learning this life lesson has helped me with since 2018. I still struggle with everyday decisions, but I attribute this to the fact that I often get overwhelmed with them.

I am happy to report that, since indeed landing in a less than supportive environment (ie. the intensive support home) in 2022, I was able to stand up for what I needed. I’m now back in quite a supportive place, but I’m glad I’m still able to advocate for myself. This doesn’t mean that the thought that everyone will ultimately abandon me if I’m myself, is gone. It’s worse than ever, in fact. I still need to work on the idea that, even if they do, that doesn’t mean I’m a bad person.

Things I Appreciate About My Current Care Home and the Care I Get

Posted on by Astrid

Hi everyone. I tend to lean towards pessimism about life in general and my care is no exception. However, I do feel that there are definitely positives about my current care home and the care I get. This evening, I’m struggling a bit with mistrust. It’s sometimes hard to realize that my staff truly want the best for me, but they do. For this reason, I’m using this post as an opportunity to share the things I appreciate about my care home and the care I receive.

1. My room. When moving here from the intensive support home, I was cautioned that my living space would be much smaller here. It is, but this I see as a positive rather than a negative. I only have one room as opposed to a separate living room and bedroom, but this means I can actually find all my belongings in one place. My room is large enough for all my stuff and this was something I hadn’t expected.

2. The lawn/yard adjacent to my room. I have a little terrace that I have a table and two chairs on, as well as a large lawn. I share it with the resident in the room next door, but she doesn’t use it at all.

3. The fact that I could choose the color for one of my walls. Okay, they didn’t have my favorite color, lilac, but I can’t see it anyway and my spouse, who can, thinks pink is much better.

4. My one-on-one support. It’s not perfect, but it’s as good as can be given the current circumstances. I have enough time for day activities.

5. The fact that staff don’t push me to be more independent than I can be. I had a pretty bad experience with this at the intensive support home. For example, staff would ask me why I was independent enough to climb over my fence during an outburst but not independent enough to tell the shampoo and shower gel apart when showering. As if these two are in any way similar! And even if they were, I’m autistic and struggle massively with executive dysfunction, as well as my energy level varying significantly from day to day.

6. The fact that the female support coordinator makes most decisions for me rather than the male one even though she is actually responsible for the other side of the home. I have had some issues with the male one, who isn’t the most socially adept, and I’m so glad they were able to make a working arrangement.

7. The fact that I get female staff for my personal care all the time. I’ve always made it very clear that I don’t feel comfortable with males helping me with this. However, at the intensive support home, I was often told I either could accept the male staff or figure out a way to do said task independently, even when there were female staff available.

8. The fact that staff have agreed not to assign me unfamiliar temp workers unless absolutely necessary. At least, that’s how most staff have explained it to me. The male support coordinator corrected me when I said I’m happy that as a general rule I won’t get unfamiliar temp workers, so now I’m not sure whether I was too optimistic. It’s still early days too, but I’m trying to be grateful.

9. My two assigned staff. Both are female, one being in her sixties and quite experienced and the other a young student staff who however has a lot of knowledge. They both have my best interest in mind.

10. My signaling plan. A signaling plan is a plan that details the various phases of alertness or emotional stability in order for everyone to help the client prevent emotional outbursts or other states of over- or under-alertness. My support coordinator at the intensive support home had herself changed mine without my knowledge or consent. Thankfully, I was able to retrieve the one I had in Raalte and we were able to build a new plan based off that.

11. The fact that, if I have concerns, I can E-mail my assigned staff and support coordinator and they’ll take my concerns seriously.

12. The fact that my fellow clients are a lot less disruptive than the ones at the intensive support home. I still experience overload from the sounds my fellow residents make at times, but it’s manageable.

13. The fact that I won’t be kicked out of here. I’m not entirely convinced of this yet – no, scratch that, I’m not convinced of it at all -, but at least so far my staff are saying they’re happy I’m here.

I’m linking this post up with Thursday Thirteen.

Regrets

Posted on by Astrid

Hi everyone. Yesterday, Sadje asked in her Sunday Poser what regrets we have about not doing, being or having something in our life.

I could share that I regret not having finished college or not having lived independently longer, but I don’t. I mean, I know my “choice” to land in the psych ward caused me to be practically abandoned by my family of origin, but I wouldn’t have my spouse now if I hadn’t gotten myself admitted. In fact, I might not have been here to write about regrets, as I was actively suicidal at the time. You could argue that I wouldn’t have died anyway. Even if death weren’t the result of my continuing to muddle through, I would have more than likely caused irreversible damage to the relationships that matter. I honestly, after all, can’t believe my parents wouldn’t have abandoned me if I’d spiraled more seriously out of control. And I’m pretty sure, like I said, that my now spouse, whom I’d just met, wouldn’t have stuck by me then either.

This doesn’t mean there isn’t a voice in me that wishes I’d done some things differently. However, as long as I live, there’s always a moment to do things differently now. For instance, if I really wish I’d finished college, I could always enroll into an Open University program.

Likewise, I do sometimes wonder whether I could’ve been more independent if this or that about my life had been different. Then again, if I really want to be more independent, I can take steps, no matter how small, to achieve it. The proverbial deep end doesn’t work for me, since that was what I got when living independently and going to university. However, I can always take steps towards improving my life.

I, as many of you know, do regret having moved out of Raalte and into the intensive support home. That, now, I see as a lesson: I want to stay here at my current home, because even if it isn’t perfect, the grass isn’t greener anywhere else. Like one of my staff sometimes says, some places don’t even have grass.

I’m linking up with Senior Salon Pit Stop #338.

#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.

#WeekendCoffeeShare (September 21, 2024)

Posted on by Astrid

Hi all on this beautiful Saturday in September. I’m joining #WeekendCoffeeShare today. It’s 7:30PM, so I just had my last cup of coffee for the day. I also had a delicious smoothie I made. I must admit, I normally don’t make the best smoothies, or at least I don’t really like them myself. This one though was absolutely great! I used banana, pineapple, coconut water and a bit of cinnamon. The cinnamon was old, so even though I’m pretty sure I put quite a bit into my smoothie, I only got a slight taste of it. I shared what I had left with my fellow residents, but since this is a virtual get-together, you are invited to grab a virtual cup.

If we were having coffee, first I’d share about the weather. It’s been absolutely gorgeous with daytime temperatures of about 23°C most of the week. It’s also been quite sunny. Mornings are chilly, but then again it’s September, so that makes perfect sense. Tomorrow is supposed to be the last warm day and then next week daytime temps are supposed to drop to as low as 13°C.

If we were having coffee, I’d probably be stating the obvious if I said I’ve been walking a lot. I sometimes feel guilty when this is pretty much all I do during my allocated activity time. Then again, I tell myself the weather isn’t going to be as beautiful as it is now forever.

I also have been taking photos on my walks. That is, I usually hand my phone to my staff, who then will be snapping the pictures. I enjoy it nonetheless. Yesterday, we were able to capture a bunny.

I have also been loving using Be My Eyes and other image description apps. Be My Eyes was even able to correct me and my staff on what type of bird was swimming in the institution pond.

If we were having coffee, I’d talk a little about the new iOS and WatchOS versions that came out on Monday. They’re quite stable and there aren’t many bugs affecting VoiceOver or Braille use. That’s a rarity with the first release of a major software update. I didn’t initially think I’d care for iOS 18, but WatchOS 11 does have some nice features and I’d need iOS 18 for that. I am looking forward to seeing my Vitals trend in a few weeks.

If we were having coffee, I’d tell you that I’ve been struggling a little with flashbacks and nightmares. I am, thankfully, for the most part still able to cope.

If we were having coffee, I’d share that on Wednesday, I celebrated one year in my current care home. I treated the entire home to burgers again, like on my birthday, but this time the salad I made as a side dish was the highlight for me.

If we were having coffee, lastly I’d tell you that on Thursday, it was my and my spouse’s thirteenth wedding anniversary. We drove to Nijmegen to have lunch at what I consider to be my favorite restaurant, Dromaai. Not that the food is exceptionally good, but I have fond memories of eating out here with my partner when I still lived in Nijmegen.

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.