Don’t Leave Me Alone! #SoCS

Posted on by Astrid

I am one of those autistic people who doesn’t like to be left alone. That is, I do need a significant amount of alone time, but it has to be on my terms. That might seem weird or normal, I don’t even know. I mean, I’m used to it being seen as weird here at the care home. Staff see it as a sign that I crave attention somehow. Which, even if it were true, well, attention is a normal human need.

I am not sure where I’m headed with this post, but I often feel like a fake autistic for feeling like I don’t want or need to be left alone when I’m in distress. Probably because my former psychologist at the psychiatric hospital used it as a reason to diagnose me with dependent personality disorder. Which I might have after all, I’m not sure. Then again, the treatment for that isn’t to leave someone to their own resources just like that.

I often have this statement in my head: “Don’t leave me alone!” It is cried out, in my head, by a child’s voice. I am pretty sure it is from a book and in Dutch, it sounds different, but I’m writing it like this here for the purposes of this post. Don’t leave me alone. Never leave me alone. Well, people always will. That’s life.

This post was written for Stream of Consciousness Saturday for this week. The prompt is “left alone”.

TGIF: A Short But Productive Week

Posted on by Astrid

Hi everyone. Today, I’m joining Paula Light’s #TGIF once again. Paula writes about this being a short week. I almost forgot about that. I mean, we don’t do Memorial Day here in the Netherlands. We have Veterans’ Day, which I believe is on June 29. However, last Sunday was Pentecost and, as with Easter, the Monday after that is called second Pentecost and is an official holiday too.

My week, despite being short, was productive. On Tuesday, I had a meeting with my behavior specialist and a behavior specialist responsible for a possible new care home (or several, I don’t know). They were purposefully vague about the home(s) this behavior specialist is in charge of. Nonetheless, I think the meeting went quite well.

On Wednesday, I was frustrated all day because my Braille display wouldn’t connect to my PC. I thought the problem was the cable, but it wasn’t. In the end, I found out that I had somehow managed to remove my Braille display from within the screen reader’s settings for default Braille display. My Braille display still doesn’t charge properly, for which a technician will come round on Tuesday.

As of yesterday, I am exercising more than I did last month, because I signed up for two challenges in a fitness app called Challenges. Yesterday, in fact, I burned over 500 active calories according to my Apple Watch. Today I’m not yet there, but I did get in significantly more steps. I don’t want this to become an obsession, so I’m making sure I do other activities too. Like, yesterday I created a polymer clay ice cream cone. I later realized that, because I had used white Premo, it needs to be cured at 135°C, but all the other colors are pretty light Fimo soft, for which 130°C is the maximum temperature (and in fact they often darken at this temperature too). I usually cure a Fimo/Premo combo at 130°C and will this time too, but am pretty sure the Fimo colors will be ruined.

This afternoon, my mother texted me asking whether I’d thought about celebrating my birthday (which is on the 27th). If it’s up to her, she’d like for my parents, my spouse and me to go out for dinner. I discussed it with my spouse, who suggested we go to our favorite chicken restaurant, which is about halfway between my parents and Lobith. Or was about halfway between my parents and Lobith, that is, since when looking it up, I found a different chicken restaurant, closer to my parents (so a longer drive for my spouse) and it turned out our favorite chicken restaurant no longer exists. I’m not yet sure what to do now, but I’ll think on it.

TGIF: Twenty-Two Degrees!

Posted on by Astrid

Hi everyone. I’m joining Paula Light for #TGIF, an opportunity to ramble.

Today, let me share about the weather. It’s been okay most of the week with some rain, some clouds and occasionally a bit of sunshine and temperatures rising to about 16°C. That’s cold for May if you ask me. Now I’m no weather expert, so I have no idea what constitutes normal weather for May, but it feels like it should be almost summer-like.

Which, today, it is. The daytime temperature reached 22°C. Well-known Dutch meteorologist Erwin Kroll, who would do the weather forecast on public television in the late 1980s and 1990s and is therefore my face of the weather, once told an interviewer on the audio magazine for blind children that this was his favorite temperature. After all, at 22°C, you can both sit still and move around without getting cold or hot respectively. I love this temperature too, though my ideal temperature is slightly warmer.

I once again wore my blue, flowery skirt that I also wore last week, along with the same blue shirt. In the evening, I changed into shorts, because I was going on the stationary bike. I had also gone for three walks today, so up till this point have nearly two hours of active minutes on my Apple Watch. I intend to still dance some, because I feel compelled to double my movement goal once again.

In other health news, I stepped onto the scale on Wednesday and I finally reached a truly healthy BMI. Yes, you heard me correct, this time it’s not nearly, but actually. Even though my dietitian tells me I no longer need to lose weight and has been telling me so for a while, I’d love to still lose a few pounds. That being said, I understand the dietitian’s logic: with my history of bulimic tendencies, it’s easy to fall into that trap again and a healthy lifestyle is more important than an ideal weight. The last time I was at a healthy BMI, was back when I got married in 2011, but then again back then I engaged in purging behaviors quite a lot too. I never, ever want to go back there.

I do need to make sure exercising doesn’t become compulsive either. That being said, that’s not as likely to happen as my body just can’t go on forever. Then again, actually listening to my body – challenging it when it needs to be challenged beyond its comfort zone and giving it a rest when it needs to rest -, is quite hard. I am working on this though.

How I Like to Spend My Weekends

Posted on by Astrid

Hi everyone. Today I’m participating in Sadje’s Sunday Poser. She asks us whether, on weekends, we like to relax at home or prefer to go out. Since I prefer a combination of both, let me share how I usually like to spend my weekends.

On Saturday, most weekends, I stay at the institution (I still can’t really bring myself to call it staying “at home”). My day schedule isn’t any different then from other days, except that we get a treat with our coffee and soda and chips in the evening. I don’t tend to lie in on Saturdays either, because I feel it’d disrupt my circadian rhythm. Which, to be honest, is quite disrupted as it is from the naps I do take. This is not just a Saturday thing though.

Like I’ve probably mentioned before, my day schedule consists of activity slots intertwined with times when I don’t have support. During my activity slots, I usually go for walks, play card games or occasionally do some crafts. During my times without support, I prefer to chill out on my bed with some music on (which usually leads to me falling asleep) or to read.

Sundays are the exciting part of my week, as my husband then visits me. He generally arrives here at around 1PM. Most weekends, we drive to Apeldoorn to go to Backwerk, where we eat a sandwich or baguette. We also usually take a stroll through the city and go to Hema, a department store which is my husband’s favorite. Sometimes, we’ll go to other stores too. I usually arrive back at the institution at around 3:15PM.

Every once in a while, I’ll go to Lobith to spend the weekend. Usually in that case, my husband picks me up on Saturday at around 3PM and I am back at the institution on Sunday around noon. Even though I usually take my laptop with me, lately I haven’t really used it at all, as we were so comfortable relaxing on the couch together that I didn’t feel a need to retreat upstairs.

As for what I prefer, I really wish there were some difference in my day schedule between weekdays and weekends, but this somehow isn’t possible. Other than that, I like the combination of relaxing in my room and going out with my husband.

TGIF: Optimal Care?

Posted on by Astrid

It’s Friday and this means Paula Light is rambling on in her TGIF post. I don’t join in each week, but today, I’d like to.

Today, I received optimal care as per my current care home’s standards. That is, my day schedule wasn’t disrupted and I had one staff member for the entire shift both morning and evening. My assigned staff says this means I’m lucky. I considered myself lucky this morning indeed, since one of the regular staff was my one-on-one staff while two temp workers were supporting the other clients. My staff for the day explained that one of the temp workers knew the other clients pretty well and he’d never worked with me, so it was decided that he’d do his shift supporting them. This, indeed, does make me feel fortunate.

However, with respect to the day schedule, I still feel that it could be better. And I don’t mean with me receiving quantitively more support. I mean that I’d like longer support times and fewer but longer times without support. I also probably want to work towards going to a day center.

I’m probably going to insist I’ll attend the meeting with the behavior specialist, support coordinator, my assigned staff and my mother-in-law next week. In my opinion, given how it’s been going over the past couple of weeks – better than before -, I’m not dead set on leaving this home as of yet. However, I do need to make sure that there’s going to be at least some room for improvement on the part of my care home. Judging from my staff’s comments, I’m pretty sure there isn’t and in fact they want me to adjust to less and less suitable for me care.

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”.

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.

TGIF: Walking and Crafting

Posted on by Astrid

Hi everyone on this third Friday of November. I’m joining Paula Light for TGIF. How is your day going? Mine’s almost over, as it is 9PM as I type this.

I had a pretty good day. Have had an okay week in general anyway. Finally got down to creating my first actual polymer clay piece here at the new care home, a flower. Creating this simple piece took me about 45 minutes yesterday, including gathering my supplies, watching the tutorial, conditioning the clay, etc. The piece nearly got ruined when the staff took it off the tile to transfer it to an oven-safe mat, but thankfully she was able to put it back together. I initially didn’t want to cure the clay because, once cured, if a piece is ugly beyond sanding/buffing, all you can do is throw it in the trash. However, after some thought, I decided I wanted something tangible to remember my first actual claying session in the new care home by.

As those who’ve seen my creations from back at the old care home, will know, this one can’t compare to those. However, I feel judging from the fact that I haven’t been actually working with clay in a long while, I did an okay job.

I also went on several walks this past week. Haven’t met my step goal, insofar as I have one – those who know the Apple Watch, know its movement goal is calorie-based, not step-based -, but I have been doing an okay job overall. My movement goal, by the way, is easy to reach. My exercise goal, not so much. My monthly goal for November on the Apple Watch is to reach my daily exercise goal 23 out of 30 days. I reached my monthly goals for September and October – different goals – with ease, but am struggling with this one, because walking and dancing are my only ways of exercising here now that I don’t have my elliptical anymore. I could cheat by starting some ball game workout when throwing a ball with my staff, but that’s not fair.

Overall, this week is going okay with respect to my care. A slightly modified version of the day schedule I mentioned last Saturday got shoved down my throat once again on Tuesday, but thankfully, most staff are willing to take it with a grain of salt (or a whole bucket of salt).

Unfortunately, the situation had to get worse over the weekend before it got slightly better and the slightly better (ie. an okay week this week) might just be chance. I won’t disclose details of the, in my opinion, unacceptable care I received over the weekend.

I talked to an independent mediator about my care situation today (this is not a secret, all staff know I did). I won’t disclose what exactly we discussed, but we’re hoping to resolve the difficult care situation as peacefully as possible.

Here’s hoping you’ll all have a good weekend.

TGIF: Lonely in a Crowd

Posted on by Astrid

Today, Paula Light talks about loneliness in her TGIF post and I thought I’d follow suit. There is this weird feeling when you feel loneliest when surrounded by a roomful of people. I’ve been feeling this way lately.

It’s not as bad as it was during my high school years, when I felt isolated in the full cafeteria because I knew no-one wanted to talk to me. I mean, back then, especially in the first year, classmates were assigned to guide me through the building and I’d be sitting during lunch break with whoever was my guide for the day. It was very obvious that most if not all classmates didn’t want me there.

The situation is different now. My fellow residents definitely do seem to want me in the living room with them. Several ask when I’m coming to have coffee there again as opposed to in my room. Some specifically come out of their rooms to join me when they hear my voice. In short, it isn’t that I’m unwanted.

And in a sense, it isn’t that I can’t connect either, although that’s probably more where my loneliness is coming from. I struggle to strike up conversations with my fellow clients especially when more than one person is talking at the same time and even more so when the staff are having a separate conversation among themselves. I also get overloaded really easily, but don’t tend to notice until it’s too late. As a result, I struggle with a need for connection but also a need for a sensory-friendly environment and these often clash. Lately, I’ve chosen connection, but I fear this will lead my staff to decide I am ready for less one-on-one support. I don’t want to be seen as too demanding of attention, but when my needs clash, I really do need support to find the right balance.