The Wednesday HodgePodge (October 18, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday once again, so time for the Wednesday HodgePodge. Here goes.

1. What’s something small you tend to sweat even though you know you shouldn’t?
Hmmm, I tend to get nervous and frustrated about a lot of things that are probably minor to others, but to say they’re things I “shouldn’t” sweat, feels a bit invalidating. I mean, I could choose the situation where staff randomly switch up who is going to support me and as a result a staff I didn’t expect shows up in my room. This often feels minor to the staff, but honestly I think they don’t know what it’d be like to depend on an almost countless number of random staff for your everyday needs.

2. October 17th is National Pasta Day…do you like pasta? What’s your favorite? Cooked at home or eaten in your favorite Italian restaurant? How often do you make/eat pasta?
I love pasta. My favorite is either penne pesto or macaroni Bolognese. I know, in the U.S. it’s spaghetti Bolognese but even that isn’t originally Italian, as it’s a combo of Naples’ spaghetti and Bolognese sauce. The way I understand it, in Bologna they eat their recipe only with tagliatelle.

I enjoy my pasta mostly home-cooked. At my old care home, we’d get home-cooked meals on weekends, which was awesome. Here, we get meal delivery service meals each day, but I already agreed with one of the staff that I’ll be helping her cook macaroni Bolognese on the 28th.

3. Do you consider yourself a spontaneous person? Explain.
No, not at all. And usually when I try to do something spontaneously, it means I’ve forgotten something else and I end up majorly messing up.

4. Who are some of your heroes? Tell us why.
Do people who are no longer alive count? In that case, my paternal grandmother, of course. Some of the autistic activist pioneers, like Mel Baggs and Cal Montgomery too. I admire their work in standing up for their and all of our rights to an actually meaningful life.

5. Let’s wrap it up with something light…Taylor Swift…are you a fan? On a scale of 1-10 how much so? (1=who’s Taylor?, 10=a true Swiftie, seen her in concert more than once). If you’re a fan what’s your favorite T. Swift song?
Uhm, 2 I guess. I’ve heard of her. I’m not a fan, but it’s not about her. The thing is, I’m not a pop music fan at all. In fact, I rarely listen to music except for soothing instrumental music when trying to fall asleep. I honestly couldn’t name any of Taylor Swift’s songs if I had to.

6. Insert your own random thought here.
I want to give a shout out to the app Be My Eyes and its AI-based image description component Be My AI. Until this was introduced several weeks ago, all we blind people had were Seeing AI, Envision AI and some other apps that did rather generic image descriptions. Be My AI, on the other hand, does a rather detailed description of images. I can’t copy an image description here because for some stupid reason I can’t get it to write its descriptions in English, but let me just say it’s great.

Walking and Making Smoothies

Posted on by Astrid

Hi everyone. I have been struggling a bit lately, but today was a good day. I went on three walks, one over an hour and 4.5km long. It rained for most of the day, but I’m not made of sugar, as they say in Dutch. I honestly have no idea where that saying comes from and what sugar has to do with not being water-resistant. I mean, there are many other substances that will melt or otherwise dissolve in water. As a side note, we only had a slight drizzle on some of our walks, so it wasn’t like I got soaked in the rain.

When the rain did come pouring down, I decided to make a smoothie. I had ordered some supplies online yesterday. Like I’ve explained before, my care home does have its own postal code but officially you need to address things to the main building, adding the home in an additional address line. Most stores though don’t allow for two address lines. So, in an attempt to bypass the need to have stuff sent to my in-laws and wait a week for my spouse to bring it here, I decided to say “screw it!” and address my order to the home with its own postal code. And guess what? It got delivered right to our doorstep. This is not how I should be handling things if I can avoid it, but it’s quite tempting, honestly. Waiting a week for my stuff rather than having it delivered within 24 hours of my placing my order, isn’t very appealing.

I had ordered carrot juice, mango nectar, agave syrup and hemp seeds. The hemp seeds are in a lot of smoothie recipes and I’d kind of impulsively ordered them to get to the minimum order amount. The person with whom I unpacked my package, didn’t ask anything about the hemp seeds, but the next staff did make a bit of a weirded out sound. I had looked it up online and found out that usually only the shells (which mine have been removed from) contain trace amounts of THC. Nonetheless, I decided not to add them to my first smoothie, which I was going to share with my fellow residents.

I did add carrot juice. I also added frozen mango chunks, which we’d ordered from the online grocery store that delivers to care homes. We added one banana and a pinch of cinnamon.

Honestly, the smoothie turned out a bit thin for my liking, but it was definitely delicious. My spouse later said that ginger and orange make for a better addition to carrot juice, which I think may be true. I’m going to try this with my remaining carrot juice.

10 on the 10th for October 2023: A Fall-Themed Would You Rather

Posted on by Astrid

Hi everyone. Today I’m joining Marsha for 10 on the 10th, for which the theme this month is a fall-related would you rather. Here goes.

1. Would you rather soak your feet in pumpkin innards or in creamed corn?
Ew to both. But if I had to choose, creamed corn it would be.

2. Would you rather dance with a scarecrow or play poker with a mummy?
Dance with a scarecrow. I can’t play poker at all and, while I can’t really dance either, that’s not really something I care about.

3. Would you rather eat an apple dipped in caramel or a pumpkin muffin iced with cream cheese frosting?
Apple. I’ve never had a pumpkin muffin and am not sure I like it, but I do love apples and caramel.

4. Would you rather dress as a clown or as a monster for an entire week?
Monster. That’s more my style and I am more of a monster than a clown anyway.

5. Would you rather rake leaves or burn marshmallows?
Neither, truthfully, but if I have to choose, I’ll burn marshmallows, because at least I can enjoy eating them afterwards.

6. Would you rather smell like a bonfire or like a cinnamon stick for an entire month?
Cinnamon stick for sure. I can’t stand the smell of bonfires.

7. Would you rather watch a scary movie or go ghost hunting?
Go ghost hunting. Like I said last week, scary movies give me nightmares. So probably does going ghost hunting, but oh well.

8. Would you rather stay overnight in a haunted house or a cemetery?
A haunted house, I guess. I don’t actually believe in ghosts, so I’d prefer the comfort of an actual bed to sleep in even if interrupted by ghostly sounds over staying in a cemetery all night.

9. Would you rather eat pumpkin pie or apple crisp?
Apple crisp. I’ve only had pumpkin pie once or twice and vaguely remember not liking it. Apple crisp sounds delish to me.

10. Would you rather be in a pie eating contest or a pumpkin carving contest?
Pie eating contest. I mean, both are equally unhealthy for me, in the sense that I’d probably cut myself in the carving contest and overeat to the point of being sick in the pie eating contest. For this reason, I’ll go with what at least gives me some joy and that’s eating pie. Unless it’s pumpkin pie, of course.

In an Ideal World

Posted on by Astrid

In an ideal world…
I’d get all the care I needed,
From all staff I trusted.

I’d be able to engage
In activities I enjoy-
Crafting, baking, walking, swimming.
Without a care in the world.

I’d live closer to my spouse
If not together.

Sigh…
In an ideal world…

This post was written for Sammi’s Weekend Writing Prompt, which this week is “ideal”. I realize that my dreams for an ideal world are a bit childish and rather self-centered. The piece was based on the thing I at one point told staff at my old home: that, in an ideal world, I’d get one-on-one all day long. This isn’t actually true, since I need alone time to read and blog and phone my spouse, for instance. However, I do feel there are ways in which my care could be improved. Some of them might be realistic, while others fall into the category of “in an ideal world”.

The Wednesday HodgePodge (October 4, 2023)

Posted on by Astrid

Hi everyone. It’s been a few weeks since I participated, so I’m joining in with the Wednesday HodgePodge once again. Here goes.

1. What’s something that scares you?
Too many things to mention, although I’m not one to have many classic phobias. My main one is toxiphobia, a fear of poisons.

2. Do you care where the food you eat comes from? To what degree?
Not really, honestly. Not that I get a say in where my care home food comes from in terms of the supermarket they order from – it’s some type of countrywide supplier specifically for care agencies. However, it’s not like I’d care much even if I did have a say. I do care about having a say in the specific foods I get to eat, which thankfully I have. When it comes to organic or not and the country my food originally comes from, I honestly am too lazy and stingy to care even when I go to the brick-and-mortar supermarket in the next town.

3. What’s something you wish you’d spent more time doing when you were younger?
Be creative. I did love writing as a child and spent a good amount of time on that, but I definitely wish I’d spent more time on other creative outlets.

4. Let’s play autumn this or that….pumpkin spice or apple cider? Corn maze or haunted house? Horror film or Hallmark movie? Blanket or sweatshirt? Watch football or watch the World Series? Foliage-red, yellow or orange?
Pumpkin spice for sure. Corn maze, though I don’t care for it either (but I hate haunted houses). Neither on the movies, but a Hallmark one if I have to choose, since the reason I hate haunted houses is because I startle extremely easily and also I don’t want nightmares. Is the blanket supposed to go onto me in the same way as a sweatshirt? Then I’ll choose a sweatshirt because it’s easier to keep in place while I type. Neither on the sports thing. That is, I’ve never heard of the World Series but assume it’s sports-related too and I never watch sports. All three colors are beautiful.

5. This time last year where were you and what were you doing?
Such an intriguing question especially today. October 4, 2022 was my last full day in the care facility in Raalte. Most of my furniture was being moved to the intensive support home (my now old care home) that day, as Raalte’s transportation person was off on Wednesdays (something thankfully my staff did realize beforehand, unlike with the recent move). Can you imagine I lived in three different care homes over the past year?

6. Insert your own random thought here.
October 4, 2023. I’ve been living in my current care home for just over two weeks and am beginning to consciously or unconsciously erase my connection to the intensive support home. Honestly, I feel awful when a temp worker tells me he knows me from there. That being said, it’s not just because it could hardly get worse than there, that my current home feels like a better fit.

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!