#WeekendCoffeeShare (February 4, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today, even though I’ve long had my last cup of coffee for the day. No soft drinks or vitamin water for me today either. In fact, I actually now realize I forgot to ask my one-on-one staff for chips this evening, which we usually get on Saturdays. Oh well, the scale will thank me (I hope). Let’s have a drink and let’s catch up.

If we were having coffee, first I’d confess that I still write “2022” rather than “2023” as the title of my coffee share posts and other dated posts regularly. I don’t think I did this for so long during previous years, but “2022” comes out so easily. Oh well.

If we were having coffee, I’d ask about your weather. Ours has been mixed. Early in the week, we had some rain, but later, we’ve had nice winter weather. Daytime temperatures have usually been at about 8°C.

If we were having coffee, I would tell you that, yesterday, I got in almost two hours of exercise according to my Apple Watch, most walking and a little dancing. “Dancing”, in my book, is usually just walking with some arm swaying to the tune of some upbeat music. I got in over 13K steps. Today, I got in nearly 11K steps too.

If we were having coffee, I would share that, like I said in my post on Wednesday, the home’s kitchen renovations are over with. On Thursday, the living room furniture got moved back to its proper place. I notice I was almost used to the temporary arrangement.

If we were having coffee, I would proudly announce that the theme for this month’s challenge in the Dutch polymer clay Facebook group is unicorns. It was chosen in part by me. I am looking forward to showing the blue unicorn that’s been waiting to be cured in the oven since Tuesday.

After all, like I said last week, someone from that group sent me some Hotfix rhinestones to try to decorate my clay sculptures with. When they arrived on Tuesday, I immediately tried them on the blue unicorn. I can’t wait to show her, the group and the world. Let’s hope the rhinestones won’t fall off.

If we were having coffee, lastly I would tell you that I had another nice visit from my mother-in-law on Tuesday. We went to Burger King to have lunch. Our food was lukewarm by the time it arrived, but that’s almost to be expected with burger chains these days. We also went to an arts and crafts store, but I decided not to buy anything, as I was rather overloaded already.

See, I did it: I created a coffee share post without complaining about my care home situation. It isn’t because it’s better. Well, today is a pretty good day for once. Let’s celebrate that and be thankful. But still all please pray I can get out of here.

Chasing Perfection? #SoCS

Posted on by Astrid

Whenever I think of how bad I feel about my current care home situation, I am reminded of two seemingly contradictory statements from my staff. One is that I think every place is horrible anyway. The other is that I had “gold in my hands” at my old home. These seem contradictory, but really aren’t. They are two sides of the same coin: I am thought of as chasing perfection.

There may be some truth to this idea indeed, but that doesn’t negate the fact that one can learn and this place is definitely bad. It isn’t like I just need to accept what I have now just because I can’t have it all. Besides, if people – the powers-that-be, such as the behavior specialists – just had been honest with me about the fact that, indeed, to live with people of higher IQ would mean more expectations and less support, I’d have declined to move. That was, after all, the comment I put at the bottom of my “housing profile”.

And it isn’t like I chase perfection everywhere. Or honestly that I thought, at the end of the day, that this place would be perfect. Yes, when I read the home’s profile on the website, I thought it’d be, but that leaflet is either outdated or simply incorrect. But when the behavior specialist for my old home explained some things about the home, I did realize it wasn’t perfect. Same when I visited here twice. But then again, perfection doesn’t exist. And I was willing to make some sacrifices to live on institution grounds and have fellow residents I could chat with. But not everything I had: all the daily structure, all the useful day activities, all the proper help with ADLs and, interestingly, behavioral regulation too. Because, despite the fact that this home is an intensive support home, which means the residents have significant challenging behavior, whereas my old home was a care-based home, I see more people managing huge wildfires of escalating behavior without realizing the proverbial cigarettes they’ve thrown onto the ground themself.

This post was inspired by today’s prompt for Stream of Consciousness Saturday: “perfection”. I am sorry for being repetitive yet again. This whole care home situation is getting old, but I wish that meant I’d actually adjusted to it. I’m not sure I ever will.

It’s All a Blur

Posted on by Astrid

It’s all a blur, this life of mine. Moments, days, weeks, months – maybe soon years, who knows? – roll into each other. I don’t like it one bit, sorry not sorry.

I may not be able to fully lay the blame on my current care home with its chaotic and yet oh so boring routine and no day activities whatsoever. I might be able to create my own routine that would somehow differentiate between mornings and evenings, weekdays and weekends, summer and winter. If only I knew how.

This post was written for this week’s Six Sentence Stories link-up, for which the prompt word is “blur”.

The Wednesday HodgePodge (February 1, 2023)

Posted on by Astrid

Hi all. After a month on hiatus, the Wednesday HodgePodge is back and I’m joining in. Here are Joyce’s questions.

1. Tell us anything you want about your January.
It was such a looong month. Oh, that’s a cliche, but who cares? I shared my monthly reflections yesterday.

2. Lake Superior State University posts a list each year of words they think should be banished from the Queen’s English for misuse, overuse, and/or general uselessness. The 2023 list includes GOAT, inflection point, quiet quitting, gaslighting, moving forward, amazing, Does that make sense?, irregardless, absolutely, and it is what it is.
Which of these words/phrases do you use regularly? Which of these words would you most like to see banished from everyday speech and why? Is there a word/phrase not on the list you’d like to add?
I use “absolutely” and “amazing” a lot. I also have a lot of other words I use way too frequently. It’s probably because my written English isn’t as good as I’d like it to be. As for a word or phrase I’d like to see banished most out of this list, it’d be “it is what it is”. That’s just such a useless statement. By the way, I have an inkling “GOAT” when spelled in all-caps means something other than the animal, but I have absolutely (see, here I go again) no idea what it means.

I don’t know which words or phrases I’d add to the list in general, but I’d erase “obviously” and “definitely” from my own personal vocabulary if I could (and replace them with a dozen synonyms). Oh wait, I could do that, but I’m too lazy to use my thesaurus.

3. February 2nd is Groundhog Day. What’s something that feels repeated in your life right now?
Wow, this HodgePodge is a true English lesson! After all, I had no idea what groundhogs even were or what they had to do with repetition. That being said, my days at this point in my life are one giant string of repetition, truthfully. In a way, they’re very unpredictable, but since there is no rhyme or reason to my weeks, the days all roll into each other.

4. What’s a food you love that’s named after a place?
I really don’t know all that many foods named after places. I was going to say “mexicano”, which is a type of rectangular mince snack, but that would be named after the ethnic group. Besides, the mexicano has nothing whatsoever to do with Mexico or Mexican food.

5. What’s the best season of the year to visit your part of the country? Tell us why.
Spring or summer. I live in a part of the Netherlands where the summers can get hotter than, say, in the coastal provinces. However, there’s a lake quite near where I live now, which is good for swimming (we used to go there when my family still lived in Apeldoorn). Spring would also be a good time to take walks around here, I guess, but I haven’t tried that yet as I moved here in the fall.

I wouldn’t recommend visiting the Netherlands during winter at all, as we hardly get snow and, even if we do, we don’t have mountains so it’s no use for skiing.

6. Insert your own random thought here.
My care home’s kitchen renovations are done! They were actually finished nearly a week early. I’m so happy about it, as it means I can finally cure my polymer clay creations in the oven. It also means the living room furniture will be moved back to the actual living room soon rather than all of my fellow clients gathering in the hallway right across from my room. That’s been quite disastrous. Honestly though, I still do want to leave this care home, as the real problems aren’t temporary.

January 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone on this final day of January. Last year, I loved looking back on each month as it related to my word of the year. I didn’t choose a word of the year for 2023. Not sure why, but I just couldn’t find one. I however do like these monthly reviews, so I’ll continue them. The monthly word of the year linky has also changed to #WBOYC, which is an acronym for What’s Been On Your Calendar. I’m joining in with this linky today for my monthly reflections.

This month, I started out with mixed feelings of hope and fear for the coming year. Just before New Year’s, my assigned staff had introduced the piece of paper with agreements re my care on it, which was slightly disappointing to me because of it being easy to interpret in multiple ways. As the weeks proceded, I found out that, indeed, it didn’t do much to improve my care. In fact, I still live moment-to-moment, not because I can’t get through each moment due to my mental health, but because the staff and home in general are so unpredictable.

Several weeks ago, I decided I definitely want to find another care home. This, obviously, requires a talk with the behavior specialist and support coordinator, but, so far, my support coordinator hasn’t responded to requests to share when she is available. I have it in my head she’s decided to ignore me until I shut up about wanting to leave. After all, several staff have started to talk nonsense about baby steps towards adjustment, and I’m pretty sure they don’t mean the steps towards adjustment should come from the staff. Even though I do experience good enough days here and there, I won’t shut up though until structural changes mean good enough is going to be the norm, and I’m sure this isn’t going to be here.

In other news, I had three visits from my mother-in-law during the month of January. I also saw my husband almost each week – missed only one because I had a cold.

I started working with the book The Artist’s Way at the end of the month. I’ve only just started with Morning Pages and am taking the program at a slower pace than is recommended, partly because I’m a slow reader and partly because I need to modify the Artist’s Dates to suit my needs. For example, since I don’t handwrite my Morning Pages, I have no reason to give myself a sticker on the envelope each day I completed them, and I can’t use regular stickers anyway. However, I saw 3D unicorn stickers and want to buy those and stick one on my laptop for each day I complete my Morning Pages for a week. Of course, since they are sold online, I may need to have them delivered to my in-laws because my care home’s address isn’t always recognized by delivery people. I’ll get to that tomorrow.

I wasn’t as crafty as I’d like to have been, but did slightly expand my horizons where it came to polymer clay, in that yesterday I started on a unicorn in a lying-down position and today I tried to decorate my latest standard, sitting unicorn with Hotfix rhinestones.

I didn’t write as many blog posts as I’d hoped during January. Of course, there was #JusJoJan, but even when the prompts did speak to me, I often didn’t write. I am still considering participating in #Write28Days in February, but honestly haven’t written anything for it. Not that I had any of the previous years I took part either, but then I was more motivated.

I did for the umpteenth time revive my Instagram account. This time, I’m actually finding some joy in it, because I actually find that I can interact with some people on there.

In the health department, January was a true mixed bag. I did get moving sufficiently, particularly walking, but healthy eating was a huge struggle. Over the month, I maintained my weight, so still 3kg to lose for me to be at a healthy BMI.

Lastly, I did attend the cerebral palsy online meeting for the provinces of Gelderland and Utrecht this evening. It was good. There will be a live meeting in March, so I’m hoping to go there too.

#WeekendCoffeeShare (January 28, 2023)

Posted on by Astrid

Hi everyone on this last Saturday of January. I’m joining #WeekendCoffeeShare today. It’s 9PM here, so I already had my last cup of coffee for the day about two hours ago. I also tasted a new drink I think I like: vitamin water. I am not under the impression that there’s all that many vitamins in it, but who cares? Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking about your weather. Ours has been cold, with daytime temperatures barely above freezing point. It’s not been raining or snowing though and today in fact it was quite sunny.

If we were having coffee, I would ask how you all are doing. I’m still struggling in my care home. Last week (or the week before, I can’t remember), I hit another low point and my mother-in-law sent an E-mail to the behavior specialist telling her I basically don’t want to stay here. The behavior specialist was going to try to schedule a meeting between me, my mother-in-law, her, my assigned staff and the support coordinator, but I haven’t heard anything so far.

If we were having coffee, I would tell you that I’ve finally been working with polymer clay again. It’s been a while. On Wednesday, I created a bull’s eye cane. That was too frustrating for me and I nearly gave up on polymer clay altogether because of it. Thankfully, in the Dutch polymer clay group as well as an unrelated FB support group, people encouraged me to continue with what I can do well, which is sculpting. This helped me to get moving and create yet another unicorn. Oh well, it’s the same style as all my other unicorns, but I intend to decorate it with Hotfix rhinestones.

I originally intended to go to a store for Hotfix products near here with my mother-in-law on Tuesday. Then someone from the Dutch polymer clay Facebook group offered to send me some samples to try. That’s so kind of her!

If we were having coffee, lastly I’d share that I haven’t had a healthy dinner all week. The reason is the fact that the care home’s kitchen is being renovated and so we can’t use it at all. The only day I had the option of a healthy dinner was today, but I can’t stand soup and certainly not pea soup. For clarity’s sake, there is a kitchen the staff can use at the day center, but all week except today they for whatever reason chose easy-to-whip-up but unhealthy alternatives such as pizza delivery, microwave pancakes or bread with Russian salad.

How have you been?

Ideal Isn’t Real

Posted on by Astrid

Today is the day the word I picked for #JusJoJan was assigned to, so I’m pretty much obliged to write a post. My original choice for a word was “Home”, but I made up my mind as I wrote my comment on Linda’s post and chose “Ideal”. My plan was to then write about my ideal care situation.

I am not sure I can do it though. An ideal situation, after all, doesn’t exist and chasing it may mean I lose sight of the things I could appreciate in what I already have. That’s possibly what happened with the move to my current care home, much as I struggle to admit it.

Of course, I knew there were going to be drawbacks to this care home, but I minimized them in my mind. When, back in like late 2021, I read up the information on this care home on my agency’s website, it sounded ideal. In fact, I remember at one point telling my staff and some people on an E-mail support group I belong to that it was my dream care home. But that’s judging from a promotional webpage, not reality.

Then when I actually got the opportunity to go here, what I found out on my visits here indeed revealed some more negatives. However, for the most part, these were vague “gut feeling” negatives, not facts. A factual negative was the fact that staff here don’t tell us clients who will be on shift the next day, reasoning that they might fall ill. “But we all come back,” the support coordinator reassured me, “and if we don’t, we’ll tell you.” Well, the one time a staff left so far, I didn’t find out in advance.

Maybe, looking back, there were clearer signs than just my gut feeling that the dream care home was going to turn into a nightmare. I am not sure. Maybe I didn’t ask the right questions. Maybe the staff – purposefully or not – avoided answering the real questions, focusing instead on details. Either way, I can’t help it now. What I can do is never believe something is going to be ideal again. Ideal isn’t real, after all.

“You’ll See Someone At Some Point.”: Autism and Day Schedules

Posted on by Astrid

I have been thinking a lot about my day schedule lately. It’s okay. Not good. Far from perfect. My assigned staff gets slightly annoyed when I point out it’s far from perfect. She thinks – and I honestly can’t blame her – that it wouldn’t be perfect until I got one-on-one 24/7. I at one point actually told my staff so (well, not exactly 24/7) – which is why I can’t blame them for thinking this. It’s not true though. I need time to sleep, to blog, to read and just to be by myself. I would indeed go crazy if I had someone in my room around the clock.

In fact, when I was talking to my home’s behavior specialist on Tuesday, I told her I could do with longer periods of alone time than the 30 minutes at a time I have now. That is, if staff stuck to the, say, 45 minutes we agreed upon. In fact, I’d love that, as 30 minutes isn’t enough to do any sort of longer meaningful activity alone, like blogging. By extending my alone times from 30 to 45 minutes (or occasionally longer), I could then lessen the number of them and by extension have longer times of supported activity, so that I could actually do something like do a bigger clay project.

This, obviously, isn’t possible at this home. Not only because staff need to leave my room at least every hour for one thing or another, but also because they need to switch as often too, sometimes without warning.

This is where I get really annoyed. I mean, I know that most pro-neurodiversity autistics despise day schedules, but mostly (I assume) because they are imposed upon them in behavioral settings etc. I actually thrive on a day schedule, but it has to be followed. I personally don’t mind Colette de Bruin’s system of What, Where, When, With Whom and What after that, as long as I have a say in the contents of my day schedule.

In my case, the “Where” is usually clear, although it does happen sometimes that I get taken into the communal room without having been given a choice, because “it’s fun”. The “When”, not so much. I do have times on my day schedule, but these are “approximates”. A few days ago, when we didn’t have dinner until six o’clock, whereas the regular time is five, this “approximate” was used against me. I don’t call that approximate.

The “With Whom” isn’t clear at all. Staff don’t tell us clients who will be working the next day or even late shift when it’s still morning, because someone might get sick. This isn’t the worst though: there are four staff in the home for each shift and they switch about randomly. I call that chaos for chaos’ sake.

Today, I called out a staff on the website’s info about the home, which claims the staff know autism. “We do know autism,” she said. Well, if she did, she wouldn’t be constantly telling me: “You’ll see someone at some point,” when leaving my room for my “time by myself”.

#WeekendCoffeeShare (January 8, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today, even though I already had my last cup of coffee for the day. I’m going to have a glass of water with my evening meds probably while in the middle of this post. Want a drink too? Maybe I can convince the staff to get you a diet soda. I can’t stand them myself and we rarely have Dubbelfrisss, my favorite drink that isn’t water, coffee or green tea, here. Anyway, let’s (pretend to) have a drink and let’s catch up.

If we were having coffee, I’d tell you that my New Year’s went okay. I went to Lobith. Like I think I mentioned, my husband ordered a waffle maker, so that we could have our own, homemade waffles. Not all turned out as they should, but we had enough of the ones that did turn out good. We spent the evening on the couch watching semi-random YouTube videos, as neither of us wanted to watch the annual New Year’s comedy performance. According to my husband, YouTube decided what we were watching, as he probably had autoplay on. By 11:30PM, both of us were too tired to wait for the clock to strike midnight and we didn’t fancy neighbors coming by to greet us either, so we went to bed.

If we were having coffee, I would share that the first week of the new year has been hard. The home has been short-staffed and many of my fellow residents have been struggling with post-holiday dysregulation. For these reasons and probably others, I am experiencing a lot of disruptions to my care again. I have had quite a few meltdowns lately. I haven’t been as severely self-harming as I was back in late October and November, but quite honestly I’m feeling almost as desperate and the only reason I’m not feeling exactly as desperate is the fact that at least on paper my care is still kind of okay.

If we were having coffee, lastly I would share that my youngest sister-in-law turned 30 yesterday. I am thankful I was able to craft a polymer clay horse for her. Well, not anything like an actual, anatomically correct horse; really just a unicorn like the ones I usually craft but without a horn. My sister-in-law’s real, living horse is called Wolympia, so I called the polymer clay one Polympia. Sadly, I forgot to take a picture before giving it to my husband to give to her.

How have you been?

Solo: Making the Most of My Alone Time

Posted on by Astrid

Today’s prompt for #JusJoJan is “solo”. It has many meanings, but the overarching one is “alone”. For this reason, I thought I’d use this as an opportunity to write about ways to make the most out of my alone time.

You see, I don’t really do well with alone time. It makes me anxious. At the same time, I need alone time. It helps me recharge. How can these two coexist, you might wonder. Honestly, I’m not quite sure.

However, the more important question is, how can I make sure the recharging effect gets the upper hand rather than my anxiety? The key to this is making the most out of my time alone.

In my old day schedule, I had random slots of alone time that could last anywhere between 15 and 60 minutes, sometimes longer if I didn’t come out of my room to alert the staff. This caused intense anxiety, because I never knew when I’d have time alone and, when I did, how long it’d last. This meant I didn’t know what activities to do during my alone time.

Now though, I usually have time slots of 30 to occasionally 45 minutes alone. In all honesty, I think the 30-minute time slots could be lengthened to 45 minutes if they could be decreased in number and by extension my time slots of activity lengthened too. This isn’t likely possible at my current care home though.

During the time of my old day schedule, I used to feel stressed when alone and as a result use up the time by wandering around my apartment. Now I occasionally still do this, but I try to put each moment of alone time to good use. For example, Bible study and blogging are things I can’t do when a staff person is in the room. I do these when I have alone time, but sometimes I struggle to finish them off during my 30-minute solo time slots. At the same time, I struggle to find meaningful activities that I can do within my 60-minute time slots (which are usually cut short) of one-to-one support. Part of the reason is my need to get into a routine – for example, of gathering my polymer clay supplies. Part of it is the fact that some staff start out by proposing a certain activity, which makes it hard for me to switch to wanting something else. And part of it is probably my mindset too, in that I get overwhelmed with not knowing how long an activity will take and thinking I “only” have this amount of time. This applies to alone time too.

I often say that, in an ideal world, I’d have one-on-one all the time. This isn’t true. In an ideal world, I’d have good chunks of alone time with staff only popping in once every 45 minutes (because otherwise I’d lose track of time), so essentially no extra care then, during later evenings and part of the weekend. I’d also have good chunks of supported activity during the day. Oh wait, that’s pretty much how I had it in Raalte and I was going to let go of comparisons with old homes. No, wait again, my day schedule back there wasn’t ideal either. But it allowed for longer chunks of activity time during weekdays and that’s really what I dream of.