September 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. September was a true rollercoaster of a month. Let me share. I am joining in with What’s Been On Your Calendar? (#WBOYC).

The month started with me being notified by my support coordinator for my now old home that I’d be moving to my current care home on the 18th of the month. The boxes arrived the next Friday and I started packing. I had a visit at my new care home on the 15th, which my mother-in-law also attended. The new staff seemed nice, but I did feel overloaded having coffee in the living room.

My move went about as chaotically as could be. For one thing, institution transport weren’t available that day, so my old support coordinator had to move most of my stuff, the rest to be moved the next day. For another, the staff here at my new home weren’t prepared with an extra staff member when I moved, so my old home’s staff had to help me get settled.

Handover also went rather frustratingly, so I was happy when my old home staff pulled away after a day. Only then began the trouble with my day schedule. I had been informed by my old home’s behavior specialist that the intention was to keep my day schedule mostly the same as at my old care home while I adjusted. This wasn’t to be. In the first week, at least three adjustments were made to my day schedule, all cutting my hours, and several more changes were not put on paper but were implemented in practice. The most frustrating changes took place in the early afternoon, including a 60-minute group activity time slot. I tried to make it work, but was often too easily overloaded, leading to extreme irritability throughout the day.

Thankfully, yesterday my assigned staff, after talking to the manager, informed me that I would be allowed a one-on-one activity time slot during the early afternoon for now anyway, during which I can do something creative. We’ll have to see how this all works out once my one-on-one has to be renewed in November.

Today, in an attempt to celebrate my time to spend doing crafty activities, I created my first polymer clay unicorn while at this home. I would’ve been able to finish it within said activity time slot had we not also been looking at recipes for baking and put my laundry in the washing machine. Thankfully, my one-on-one staff for this activity time slot was able to come back at a later time and finish the unicorn with me.

Overall, like I said, this month was a true rollercoaster with lots of ups and a few deep downs. Things are looking up now though.

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.

#WeekendCoffeeShare (September 23, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare. I’ve long had my last cup of coffee for the day, as it’s 9PM. In fact, most people here at my new care home are in bed already. I guess I’ll have just water to offer you now, sorry. Let’s catch up anyway.

If we were having coffee, I’d start out by moaning about the weather. Fall has well and truly set in here. The temperature hardly got above 20°C at all this week and most days it didn’t get above like 17°C. Moreover, unlike the heating in my old care home apartment, which was set to an uncomfortably warm setting all year round, this room’s heating seems to be stuck on the cold side.

If we were having coffee, then I’d post another petting zoo picture. This one is of the birds once again. Did I mention that my new care home is like a two-minute walk from the petting zoo?

If we were having coffee, then I’d share that I’m adjusting better to living in this care home than I was to living in my previous one. Like I mentioned on Thursday, I started working with polymer clay, in fact. I haven’t put anything into the oven yet, as I first need to test the oven temperature before subjecting my precious projects to it. However, I’m happy to report I already finished two simple pieces: the planet charm I mentioned on Thursday and a flower.

In addition to working with polymer clay, I have created a shower gel (from just a base and essential oils) and made a bracelet. I did play card and dice games too. I didn’t walk as much as I used to at my old care home, but that’s okay.

I am still struggling with mornings and early afternoons, but I’m giving it a chance to work out. For example, yesterday I came up with the idea of watching children’s stories on YouTube when I have my group activity time. I normally watch those in English, which of course the other clients can’t make sense of, but I could definitely find Dutch children’s stories on YouTube too.

If we were having coffee, lastly I’d share that I bought another collection of journaling prompts that I’d really been looking forward to on Tuesday, only to find out that the actual prompts are probably handwritten or something inside the Kindle book and I can’t access them using my screen reader. This is a relatively common occurrence with Kindle books and I honestly feel that Amazon shouldn’t claim screen readers are supported in that case. Oh well, I have tons of other prompts to choose from.

Day Four

Posted on by Astrid

Today is day four in my new care home. On day four in the home I moved to last year, I was forcefully “helped” (more like dragged) to my room, left alone for most of the shift and expected to almost completely independently walk around the home because “the more independent you become, the less bothered you’ll feel by us [= staff]”.

By contrast, today, I made my first simple polymer clay creation, a planet charm. I tried my hand at polymer clay at the old care home for the first time after two weeks, but it was discontinued because it took too much time. Then I couldn’t work with polymer clay again until my day schedule was created in December. In other words, I did something today I couldn’t do at my old care home until significant improvements were made.

Should I compare my current experience to the improved experience at my old care home? No, I don’t think so. After all, I’m still adjusting here, something I never did there. Chances are things will improve here too as I learn to adapt or my staff adapt to me or both. I hope so.

Because, to be honest, it’s better than my early days at the old care home, but I’m still struggling significantly. For one thing, my one-on-one, despite what the behavior specialist responsible for my old care home had said, did get cut. It started today and this meant I had to spend a significant amount of the day either in the living room or alone in my room. I am giving it a serious chance of working out, but it’s really hard. Hopefully, I will be able to acknowledge when I turn out to be capable of handling more than I expected and the staff will be able to accommodate me should I not be able to.

#WeekendCoffeeShare (September 16, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. I just had my afternoon coffee, but will probably not finish this post in one go, as I have an activity moment again in half an hour. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. We’ve had pretty nice late summer weather here with temps rising to between 20°C and 25°C during the day. Next week, we’re supposed to get rain and then I’m pretty sure it’s over with the warm weather, although October can occasionally bring days when the temperature reaches 20°C too. I love telling tales of the day, about five or six years ago, when we had a daytime high of 27°C here in mid-October.

If we were having coffee, then I’d talk about my walking and other exercise. I went swimming on Wednesday. It’ll probably have been the last time for now, as I’m moving to the new care home on Monday, although the swimming instructor did say my new home’s clients go swimming too.

I went on the stationary bike yesterday. Other than that, my physical activity has been hit and miss. Some days, I got in over 10K steps, while on other days, I hardly walked at all.

If we were having coffee, I would however share that, on one of my walks, last Tuesday, I visited the institution petting zoo and took some lovely pictures. The first picture shows the petting zoo’s cat, Macho, on a stack of hay.

There also is a large aviary with parakeets in it. Here are two photos of the birds in their cage.


If we were having coffee, finally I’d tell you all about my visit to my new care home. I went there with a staff and my mother-in-law. Since this staff has been pushing me towards independence more than I can handle lately and since she’ll be doing handover too, I was disappointed that she’d be attending the visit too. After all, that’d mean I wouldn’t be able to talk to my new staff about my needs without her overhearing.

When we got to the home, we were greeted by the man who will be my new assigned staff, same one who’d been talking to my mother-in-law about the color paint on my wall. I had thought he’d be my support coordinator but apparently not. I don’t know who my support coordinator will be yet. Not a problem, since in general you have more day-to-day contact with your assigned staff than your support coordinator. When still outside, I heard a loud singing of “Happy Birthday!”. This turned out to come from the neighboring home though, as no-one had a birthday this day.

We were led into the living room, where a number of residents and another staff were having coffee. I initially thought there were two staff, since one of the residents talked in an almost identical voice and said almost the same things as the staff. This turned out to be echolalia though.

The residents in this home are more significantly intellectually disabled than those at my current home. Most can speak a little though. Like, one told me I had a pretty golden ring. When I told my spouse about this, I was reminded of my preference last year for a home with people with mild intellectual disability. Yeah, I replied, but I didn’t know back then what I had to give up to live with people with whom I can have a conversation.

Overall, the staff seemed much nicer than those at my current care home. For one thing, both staff introduced themselves, while back when I went to look around here last year only the staff who would be giving me the tour told me their name.

I was led to my room, which is the closest to the living room. This has disadvantages, in that I may be able to hear living room sounds more, but it has a huge advantage in that I will be able to find it much more easily than my current room. The wall is a nice baby pink according to my mother-in-law. I wasn’t able to get a real impression of my room without my furniture in it yet, but that’s not a problem.

When shown around, I did make it clear what my needs are re help with my activities of daily living and that I’m not ready to grow yet, since that will take me being stable first. The staff who was with me didn’t comment, thankfully. Overall, I feel less stressed about moving to the new home now that I’ve met my new fellow residents and staff.

I have yet to pack my clothes. Other than that, everything is in boxes now and ready to be moved. I’m ready for a new chapter in my life!

Sounds of the Intensive Support Home

Posted on by Astrid

Hi everyone. This week, one of Mama Kat’s writing prompts is to listen to the sounds in your house for five or ten minutes and let them inspire a blog post. I honestly don’t need to do this right now – I have my AirPods in my ears and their noise canceling is pretty good. Instead, since most sounds here are the same most days, I’ll write about the sounds I usually hear.

There’s this fan in my room. I have no idea what it does, but when they test the smoke alarm or when the smoke alarm goes off for another reason, it makes a deafening noise. Even when the smoke alarm doesn’t go off, the noise is a constant hum. When I came to look around here to see if I might want to live here, I thought I’d get used to it and, indeed, this is the least annoying of the daily noises, because it’s constant and monotonous.

Today, like most days, the resident who has his room next to mine was screaming and kicking his door non-stop for most of the day too. This is an intensely triggering sound, even though when the resident is this irritable he usually gets locked into his room. In fact, it triggers me, not just because I’m scared of his aggression, but also because I feel pity for him being locked into his room.

Then when I’m really lucky (not!), the resident two doors away from him has an outburst too and is being locked into her room as well. I am lucky (although truthfully I shouldn’t have to say that) that the threat of locking me up has only been used once. And I am really thankful the behavior specialist hasn’t approved locking me up or that threat might’ve been followed through on.

Then, if my window is open, or sometimes even when it’s not, I can usually hear the music the resident two doors from me on the other side listens to. He has been listening to St. Nicholas music lately, even though that celebration isn’t until December 5.

Then there are the various hallway noises. Sometimes I can hear another resident laughing or grumbling. At other times, I hear the staff fooling around. I can also hear one resident’s pet parakeet if it’s really quiet otherwise. That is a sound I cherish.

As you can tell, I mostly don’t like the sounds I hear here. Then again, I don’t like most of the things about the intensive support care home (my current care home). I hope at least some things will be better once I move to my new home this coming Monday.

Mama’s Losin’ It

My (Second) Favorite September Memory

Posted on by Astrid

Hi everyone. I want to write, but honestly don’t feel like sharing about all the stressors of the last few days in my current care home. Instead, I decided to draw inspiration from Marsha’s 10 on the 10th post again and share one of my favorite September memories. My favorite of all time is of course my wedding date in 2011, but I’ve written tons of posts about that already I believe. So I’m going to share about my other favorite memory. This is only a favorite memory in hindsight, as it was intensely stressful back then. I refer, of course, to my moving into the care facility in Raalte on September 23, 2019.

I arrived in Raalte at around 1PM, which was a bit earlier than I’d agreed on I believe, but the staff who would be showing me round had just arrived. She showed me my room and let my spouse move my furniture into it. I remember we had some discussions about things that had to be agreed upon. My spouse clearly stated that I couldn’t manage my own meds, as I’d taken two med overdoses when living in our house. The staff had been kind enough to mark the door handles of my room and the living room with tape, so that I could recognize them by touch when wall-trailing.

I also got a short tour of the day center, that is, the group I’d be attending. I remember they had a hand-made banner with “Welcome, Astrid!” on it. The guy who came here in crisis last November also got a welcome banner, but I got nothing when I got here.

In the evening, when the other clients got home from the day center, we had dinner. After that, one of the staff said she was going for a walk with one of my fellow clients. I was tempted to ask whether I could join them, but can’t remember whether I did.

I remember feeling quite a bit in shock when first coming to this care home. I asked my spouse: “You don’t think it’s all stupid, do you?” I referred to the fact that the other residents were severely intellectually disabled. Maybe I’d also noticed the poo smell. This was one of the first things my spouse asked me about when I went to have a look around my current care home. Truthfully though, I don’t care about poo smell if I get proper care.

Memories of My Paternal Grandfather

Posted on by Astrid

Hi everyone. Today is National Grandparents’ Day in the United States. I heard of this a few days ago when looking for inspiration for my blog, but didn’t feel like writing about the topic at the time. Now, the subject returns in Marsha’s 10 on the 10th post. This is a meme in which Marsha asks ten questions related to a particular topic of the month. Rather than answer all ten, I’m going with one of them, which is to share a favorite memory involving your grandparent(s).

I have shared about my paternal grandmother a lot of times already. She was certainly my favorite grandparent. Today though, I’m going to share about my paternal grandfather.

My paternal grandparents divorced in 1973, years before I was born. They didn’t have much contact since, as all of their children were adults by that time. In fact, I can’t remember a birthday or holiday when they visited my family on the same day.

My paternal grandfather was a radio technician during his working life. He knew a lot about all sorts of science and tech things. Indeed, my parents tell me I acquired my first spoken word from him. As the story goes, my father and grandfather were discussing aviation and, at one point, either of them mentioned the word “aircraft industry”. I, then ten-months-old (seven months corrected for prematurity), parroted: “Aircraft industry.” This, my parents see as a sign of my being a genius. Most of my psychologists in my adult life have seen it as one of the early signs of autism.

My paternal grandfather was probably on the spectrum himself too (as is my father, though he doesn’t care about diagnoses). We had these traditions built into his visits with us. One of them was him always giving my sister and me ƒ5 each. At one point, when my father had probably decided we were too old for this, our grandfather put the coins in a very hard to open money-box with transparant sides, so that we could see our money but not reach it. I am pretty sure I had a tantrum over it.

My grandpa had a small motorized boat. Well, large enough to sleep in. My sister once went on a week-long sleepover on the boat with him. Mid-way through it, my parents and I visited them and we sailed IJsselmeer a bit. I was both scared and excited, as we could leave the boat when it was anchored and have a swim around.

I went to grammar school, the type of high-level high school I attended, in 1999. My grandfather had attended grammar school back in the 1930s, so he gave me some kind of a button with “grammar school 1” written on it.

By that time, age 75, my grandfather started thinking he was suffering from dementia. My father brushed it off, saying he probably thinks he has dementia when he doesn’t remember the most difficult of the Latin words he learned in grammar school. As it turned out, my grandpa was right after all, as he was diagnosed with pretty advanced dementia in late 2001, age 77. At this point, he needed to be placed in a nursing home. He died not even eighteen months later. Now that I know more about dementia, I know that the stage of not recognizing people and having no short-term memory whatsoever, is by far not the first stage of dementia. I realize now too that my paternal grandmother probably suffered from mid-stage dementia too, but died of another cause before entering the phase at which point my grandfather was diagnosed. It is truly tragic that my grandfather wasn’t taken seriously.

Gratitude List (September 8, 2023) #TToT

Posted on by Astrid

Hi everyone. It was a rather eventful week. Time for me to focus on the positives in a gratitude post. I’m joining Ten Things of Thankful, which is back after a hiatus over the summer. Here are my thankfuls.

1. I am grateful I have a moving date! This obviously tops my list. Like I mentioned on Wednesday, I’ll be moving to the new care home on the 18th.

2. I am grateful my mother-in-law is taking time off from her volunteer job to come to the visit to look at my room and have a coffee at the new care home on the 15th. Hers may be a volunteer job, but it’s responsible work, as she works for an animal rescue shelter and they’re required to maintain 24/7 availability.

3. I am grateful for quality time spent chatting and playing dice games with a fellow resident. Today, she won, which was good, as I had spilled the beans about my leaving this home a little earlier than I’d originally planned and she was quite upset. For the record, I didn’t let her win.

4. I am grateful for the nice card this resident gave me, even though I told her I wouldn’t be leaving today.

5. I am grateful for sunny and warm (well, hot) weather. It’s a little too hot for my liking, but I love the fact that I can wear my summer clothes a little longer than usual.

6. I am grateful my Braille display and computer both behave. Both gave me a scare this week. I bought new headphones on Sunday. Not because I needed them but because they’re fluffy and pink. Then when I plugged them into my computer, somehow my PC decided to install TikTok. This was a coincidence, as a 3.5mm audio cable can’t transfer data like that. However, I had no clue so started messing with my computer like crazy, uninstalling everything I didn’t recognize. This thankfully didn’t cause any long-term problems, but for a while I thought my Braille display wasn’t working so I must’ve somehow uninstalled its driver (even though I recognize that manufacturer). In the end, rebooting my Braille display solved the problem.

7. I am grateful for a delicious blueberry smoothie I made on Monday with a temp worker. I used frozen blueberries, yoghurt, vanilla extract, cinnamon and sweetener. It was absolutely amazing!

8. I am grateful for some long walks when it still wasn’t too hot outside.

9. I am grateful for a great essential oil blend in my diffuser. Yesterday, a fellow resident was out of control a lot and it was causing me anxiety. I eventually decided to ask the staff to help me create a blend so that I could calm down. I put patchouli, white fir and lavender essential oils in the diffuser.

10. I am grateful for the will to write. I may not always know what to write about, but at least I want to write. I currently have a seven-day writing streak going (although I still need to write today, which will make it eight days) in Day One, which is rather cool. Sometimes, all I write is a quick gratitude list (which I drew inspiration from for this post) or a “My Day” template post, but that’s okay too.

What are you grateful for?

The Wednesday HodgePodge (September 6, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge once again. Here goes.

1. It’s National Read A Book Day…whatcha’ reading? What’s a book you want to read?
Honestly, I’m not currently reading any book. That is, I’m paging through a few, among them a positive body image workbook and Find Your Path by Carrie Underwood. And of course a ton of journaling books. I can’t remember the last book I actually read. I thought I wanted to read Cathy Glass’ latest foster care memoir, only to find out it’s her penultimate book. That’s truly sad, as I love the author. It immediately caused me so much disappointment I don’t think I want to read this book after all.

2. Which is better…having high expectations or low expectations? Explain why.
I am probably in the minority here, but I think having low expectations is better. Still better yet is having no expectations at all, but to let things unfold as they will. I grew up with parents who put a lot of pressure on me under the guise of high expectations and this – among many other things – led to some emotional scars. I also feel that, if we have high expectations of others in life in general – so people other than those lower on the social ladder than us (like children) -, we often come across as demanding and critical.

3. Serenity is ________________________.
A feeling of calm and being in the present.

4. What’s the most interesting thing in your purse or pocket right now?
Uhm, I don’t have a purse and rarely have anything in my pockets.

5. What helps you calm down?
Ideally, lying under my weighted blanket with my stuffed lemur’s tail over me, my essential oil diffuser on and a calming Spotify playlist like this one playing on my music pillow. Or just lying under my weighted blanket, if my phone needs charging and I don’t have any essential oil blend in my diffuser at the moment.

6. Insert your own random thought here.
I have some awesome news: I have a moving date!!! On September 18, I will be moving to the new care home. I still know next to nothing about it, but I’ll follow my advice on question #2 and just let things unfold as they will.