Testing, Testing… In So Many Ways…

Posted on by Astrid

Hi everyone. Today I’m once again joining in with Esther’s writing prompt. The word this week is “test”. I could, like I’ve done so many times, rant about the use and misuse of testing in education and care. I mean, everyone who’s followed my blog for some time knows about the nearly thirty-year-old, horribly flawed IQ score still in my care plan today. However, I recently saw the housing profile that will be used in finding me a more suitable place and it thankfully never mentions my IQ.

There are, of course, many other meanings to the word “test”. It could refer to something new you’re trying. For example, today I cooked a cabbage and mashed potato dish. It was the first time I cooked something with mashed potatoes (or boiled potatoes in general, for that matter). When I mashed the cabbage/potato mixture, it sounded horribly soggy, so I almost threw out the entire pot. Thankfully, a staff convinced me to let it sit and see if I and/or my fellow residents would like it regardless. Turns out that, though the texture was too smooth for my liking, it wasn’t nearly as bad as I’d expected.

On Monday, I also took out my AirPods to test if they still worked. My best friend had cleaned them several months ago and I was too impatient to let them properly dry. Turns out my right earbud was ruined, though the left one still works. I have been using headphones ever since, but don’t particularly like the feel of headphones on my ears. I do have earbuds, but cannot use those to make phone calls.

This got me thinking of finally buying new AirPods. Browsing the Apple Store online sent me down a rabbit hole of thinking I might want to buy a Macbook again. I had one for about six months in 2019, but struggled to get used to it. The thing is though, I bought that one without researching it properly first because my previous Windows laptop had been near-dead for several months and health insurance wouldn’t pay for me to get JAWS for Windows. JAWS at the time didn’t have a subscription plan, so I’d have to pay like €1000 for just a screen reader. That didn’t make sense to me, so I spent this money on a new Macbook. Six months later, insurance changed its mind and I couldn’t wait to buy a Windows laptop again. I sold my Macbook to my then mother-in-law. Now that my Windows laptop is still working and, besides, I do get annual JAWS upgrades, I have more time to actually orient myself before making a choice.

My best friend was a bit worried when I mentioned the idea of buying a Macbook, because well she doesn’t want me to get overly stressed about it like I was in 2019. That being said, Windows has near-weekly updates that change things around, so I’m more used to adjusting to changes in my tech than I was back then. We’ll see where this goes…

Every Move Counts!

Posted on by Astrid
Daily writing prompt
Hit 5,000 steps today and drop your achievement here — we’re cheering you on!
View all responses

I have had an Apple Watch for nearly four years. Its movement goals are based on calories burned while being physically active rather than steps. It doesn’t even automatically display your step count. I just checked the Health app on my iPhone and my step count on there is nearly 7,000 at 7:30PM.

Because I get most of my physical exercise through walking, I can safely assume that a day’s step count at least correlates to my level of physical activity for the day. That is, unless I rode the side-by-side bike to the next town or even farther.

My calorie goal on my Apple Watch is 300. This goal is fairly easy to reach if I go for at least one walk. Even if I don’t walk, I can still reach it by dancing for about 20 minutes. The only times I didn’t reach my movement goal, were times when I wasn’t physically active at all, like during last week’s heatwave.

That being said, level of physical activity alone doesn’t determine health benefits. Effort does too. People who use a wheelchair full-time can still experience some health benefits of physical activity when they challenge themselves beyond their comfort zone. At least, this applies to brain health benefits. For metabolic health, actual movement is required. But not necessarily steps.

I honestly believe that I, even though I regularly hit those elusive 10K steps, experience fewer health benefits from my physical exercise than many who get in fewer steps. I mean, like I said, most of my physical activity involves walking. I should really incorporate more varied exercise into my routine. I do try to challenge myself physically even though this is in ways non-disabled people wouldn’t consider challenging. This way, I hope to keep my mind as sharp as possible.

Missing Mommy #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for Stream of Consciousness Saturday is “miss”. I immediately thought of the fact that I miss my mother. No, scratch that: I miss Mommy. I miss a mother I honestly never had.

When I was little, my mother did try to stand up for me to my father, who’d been adamant that if I didn’t meet his expectations for me, I wasn’t worth raising. Not even worthy of life. As regular readers of my blog know, my father asked the doctor when I was an infant in the NICU whether I should still be treated aggressively given my possible future quality of life. The doctor was adamant that they were keeping me alive no matter what.

As I get older, accept more care and show more and more that I’m unable (and unwilling!) to conform to my parents’ rigid ideas of a person with a life worth living, I find that my mother is the one most vocal about the fact that she’d rather die than than live like this. And by she, she means me.

Nonetheless, I can’t keep from texting my mother. I honestly wish I could full on go no contact, but that’d be extremely hard if not impossible. I’m working on making sure that at least she will never be appointed to be my medical power of attorney. I am thinking hard about the difficult choices should I actually deteriorate to the point of no longer being able to make my own decisions. The first step, after all, is making those wishes clear.

However, all this doesn’t keep me from missing Mommy. That is, missing a mother who unconditionally loves me whether I’m disabled, queer, neither or as in my case both.

Divorced Woman Laughing…

Posted on by Astrid

Hi everyone. I’m still struggling quite a bit with all sorts of things related to my care. Haven’t heard back from the client confidante yet and it looks like either way my staff, including my support coordinator and assigned staff, don’t care. All I can do right now is power through and make the most of my day.

My wife and I had a meeting with the mediator on our divorce today. We are 100% in agreement about what we want, so it’s really an easy process for the mediator. That’s what she actually quite literally said. My wife joked on our way out that for once we’re the easier ones. We literally left the building laughing.

This is my main positive for the day. I can’t stand it that my staff all seem to assume the divorce is a major stressor in my life. I understand why, since most have probably gone through a break-up and none have been institutionalized. However, I’ve probably explained dozens of times that my best friend and the complicating factors involved with our friendship (like the divorce) are the least of my worries at the moment.

I did ask the client confidante about my daily records and whether there are guidelines on what to write in them and not to write in them. The reason is the fact that, at least once (admittedly a while ago), my then assigned staff almost word for word wrote out an argument with my wife I’d told her about. On the other hand, staff are extremely cautious where it comes to reporting on issues I’ve had with them or their coworkers. They don’t use names at all, which I can sort of understand, but they also go to great lengths to make it sound like I was always the bad one in the interaction. For example, I’ve seen staff report that I was “being rude” or “twisting their words” without elaborating on what they and I said. The reason said staff wrote out the argument I’d had with my wife, she said, was that she worried I might be stressed about it later on. Then for goodness’ sake write out the interactions I do say stress me out! But they won’t, because they don’t want to make their coworkers look bad… so they choose to throw me and my best friend under the bus instead.

After the mediation meeting, my wife and I went to Burger King to grab a vegan burger. It was good. All the while, we kept calling each other “participant A” (my wife) and “participant B” (me), since those are our formal titles on the agreement (thankfully the mediator uses our first names most of the time). At the next meeting, we’ll sign the agreement. It will probably take a while after that for our divorce to be registered. In that sense, the title of this post is a little misleading, but I like it this way.

Unmasking…

Posted on by Astrid

Hi everyone. I’ve been struggling intensely for a while now. The aggressive meltdown that caused me to land with my head on the floor (as I mentioned in the comments on that post, I wasn’t actually thrown) was only the proverbial straw that broke the camel’s back. I’ve been having chronic headaches and nausea that the doctor says aren’t due to the fall. Last Wednesday, I had a fever just when the doctor took my temp, so she concluded I must have the flu or something. I doubt it, as I didn’t have a fever any other time my temp was taken and I’m not having any other flu symptoms. I’m more sensitive to stimuli, mostly sounds and scents, than I used to be. Unfortunately, my ability to argue hasn’t gone, so the staff believe I’m “oppressing” them when I refuse them access to my room when wearing strong perfumes. This morning, my support coordinator told me to stop pacing my room, saying it’s compulsive and that compulsive behavior only worsens over time. She may be right about that, but it’s not like I’m doing anyone any harm by pacing and it’s not like the staff deal with the reason for my being more compulsive. I’m pretty sure I’m in significant burnout and the obvious solution to my staff seems to be to repress my behaviors that indicate I’m in distress.

I’m trying to read up and listen to podcasts on autistic self-discovery and unmasking. Not that I have the attention span to read for longer than about fifteen minutes at a time. Or that I think any of the recommendations I find, are useful to me, simply because I have an institution and rather behaviorist staff to deal with. I’m also unsure where to draw the line between valid unmasking and infringing upon other people’s rights. For example, apparently I’m not allowed to ask staff to wear less perfume because that’s “oppressive” and I don’t know where it’ll end when I keep “choosing” to be by myself rather than accepting staff who are essentially presenting in a willfully overloading manner.

A Good Mood

Posted on by Astrid

Hi all on this rainy Wednesday. I just found Esther’s writing prompt for this week, which is “mood”. Since I’m in a pretty good mood right now, it feels appropriate to write about it.

Yesterday, I had a meeting with my support coordinator and the behavior specialist who’s filling in while my home’s regular one is on maternity leave. As regular readers of my blog might know, we’re in the process of designing a new, activity-based day schedule for me. Initially, the draft didn’t appeal to me, because for one thing I’d wanted it to include time for me to have a cup of tea in the living room later in the evening. As those who’ve followed me for a long while will know, I introduced this cup of tea last summer and it helped me through a dark period. Of course, I’ve mentioned more than once that if a cup of tea is the only thing to lift my mood during a day or even week, that’s not really all that good. I mean, yes, it signifies that I’m not majorly depressed, but it isn’t particularly a sign of good quality of life.

My support coordinator yesterday told the behavior specialist about my daily positives and negatives, which I’ve been sending out to her and my assigned staff on a weekly basis. She mentioned that my positives usually include activities that have meaning for me, such as crafting, cooking, baking or the like. My negatives usually involve situations in which the staff don’t adequately support me based on my needs of that moment, such as when they place too much responsibility on me.

Yesterday, I for the first time in a while had a day in which I didn’t see any negatives. When I wrote in the Gratitude app in the evening, I even rated my mood as “good”. Not “great”, but I don’t expect to feel great. I usually rate my daily moods as “okay” at best.

I listed several positives yesterday too. One was my having made another batch of homemade granola. This takes only about half an hour total, but it significantly lifts my mood to make it.

Similarly, on Monday, we had twenty minutes left of my long activity time slot in the afternoon after having gone on a walk and having had coffee at the institution townhouse. My staff initially proposed we play a dice game, but I suggested we try making a simple bracelet. My staff questioned whether we’d have enough time to finish this, but I challenged her by saying we could at least try. Usually, I’m the one suffering from inertia because I fear we cannot finish an activity within my allocated time slot. That’s one reason I proposed doing a more activity-based day schedule, of course including approximate times for the activities. Anyway, guess what? We finished the bracelet on time!

Today, if nothing major happens to diminish my mood, I’ll also have a day with no negatives. This morning, I started off by feeling a bit stuck by fear of there not being time for an activity. Thankfully, I pulled myself through it and guess what? I made not just the one thing out of polymer clay I’d wanted to make, a rolling dice for a staff who’s leaving and with whom I used to play dice all the time. I also started on a project for a staff who’s just become a father. Of course, since the dice had to be painted, I didn’t finish it right then, but I did in the afternoon, just on time for the staff’s goodbye.

My support coordinator is definitely right that meaningful activities are what help me get in a good mood. Isn’t that normal though?

Feeling Love #SoCS

Posted on by Astrid

Hi all. Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “love”. I was immediately reminded of a moment, about seven years ago, when I learned of emotional development and learned that seven-year-olds can feel and understand complex emotions like love. I can’t say I don’t value people, but I have no idea what “love” feels like. When I told my wife about this, she was upset until I explained that it doesn’t mean I don’t consider her special. Maybe “love” is just not the right word for it, or maybe it is.

Now that we’re in the process of divorcing, I am the one feeling the most distress over the idea of not considering my wife my partner anymore. I wouldn’t say I’m very romantic, like I wrote last year in response to a WordPress daily prompt, but I’m the one out of the two of us who feels the most comfortable with romantic gestures, such as giving one another heart-shaped gifts. In fact, I feel slightly sad that my wife would prefer I no longer make “romantic” gifts for her.

Does this mean I feel love? Or is it just something I’ve rationally connected, like when my wife and I got married thinking this was the way to go if we wanted to show each other that we’ll always be together? I wonder about this many times: how much of my expression of my emotional experience is genuinely in alignment with my actual feelings and how much is learned as part of the process of growing up? In some ways, it doesn’t matter, as emotional development is partly learned in all people. However, what I mean is, do I actually no what I feel or am I just mimicking how I see other people label certain experiences?

In this respect, I am always reminded of a snippet in a book on autism. A mother had explained to her autistic son that he was feeling jealous when his sister got a doll and he didn’t. The next time he expressed jealousy, this time at his sister getting attention while he didn’t I believe, his mother again said he was probably jealous. The boy then replied that jealous is when his sister gets a doll. This is often how I express feelings too. Does it mean I love my wife because we’re on the phone for at least an hour everyday? Does love only count when I give her heart-shaped gifts? Can I love other people besides my wife? Does it, in this respect, matter if we were to stay married or now that we’re divorcing but will remain best friends? I honestly have no idea.

When We Said Our Vows…

Posted on by Astrid

When my wife and I said our vows to get married in September of 2011, we were clear about the reason for getting married: it wasn’t about money, it wasn’t about living together, it wasn’t about kids, rather it was about us making a vow to always be soulmates.

My wife and I have been talking divorce for over a year now and, though we canceled the lawyer’s appt last summer, we’re now pretty certain that we’re going to divorce after all.

The reason, once again, has little to do with our love for one another. We still say “I love you” almost every time at the end of a phone call – and there are plenty of phone calls between the two of us. Neither of us though mean this in a romantic or sexual context. If I’m being fully honest, we should always have been best friends rather than partners, as that’s what we are and that will (hopefully) never change.

This post was written for the Six Sentence Story blog hop, for which the prompt this week is “vow”.

My Life Is Virtually Virtual

Posted on by Astrid
Daily writing prompt
In what ways do you communicate online?
View all responses

I get almost all of my social interaction from the Internet. I mean, yes, I do interact with my staff offline, but I mean interaction for fun and connections. Heck, without the Internet, I wouldn’t have met my wife. I have probably told the story of how we met a few times before, but it all boils down to one message I put on a forum back in 2007 and my now wife’s desire to expand her social circle. Had I not moaned about being bored and feeling lonely living on my own, she might never have reached out.

As for the types of online communication I use, these have evolved a lot over the years. Forums are no longer a thing. Neither is Facebook or so I’m told, but I still use it almost daily. I rarely post anything to my personal wall, but I do participate in groups and gather information off Facebook (though obviously one might wonder how much of that information is actually misinformation).

I’ve been told blogging is no longer a thing either. It’s probably partly true, in that for a blogger I’m young at 39 and eventually the generations above me will die out. I have been blogging on WordPress for 19 years next month, though I’ve only had my current blog for 7 1/2. Oh wait, I briefly had this blog back in 2011 too and till this day remember an embarrassing post about my wife from just after we got married.

So what types of online communication are actually still a thing today? I doubt I use many of them. I never used Snapchat and only watched a couple TikTok videos several years ago. I did try Instagram several times, but didn’t like it. I do watch YouTube videos, but will never create video content myself and that does make it less fun.

I do try to use Discord for expanding my social circle but experience that I’m a dinosaur compared to most of the users even on adult-oriented servers. Oh wait, someone half my age is already an adult. I remember explaining that Discord is like IRC and mentioning this in a Discord server and no-one knew what IRC was. I got a comment asking how it felt to be older than Google and responded that I’m even older than the World Wide Web.

As I get older, I find it harder to adjust to the new developments in online communication. I mean, I’m typing this post using the Block Editor and that’s a major struggle for me already. I learned WhatsApp with relative ease in 2017, but Discord is very hard for me to adapt to. However, I do want to keep up with the changing world of Internet-based interactions. If I don’t, I’ll lose the most important vessel of connection to the outside world. After all, my life might’ve become less exclusively virtual since living in a care home, but like I mentioned at the start of this post, the Internet is still where I gather most opportunities for leisurely interaction.

Don’t Get Me Started… #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “Don’t get me started”. Oh my, don’t get me started… or I’ll rant forever.

I have this habit of ranting about my care to whoever will listen. Not even about my current care, but about my care at the intensive support home. This afternoon, I was telling a staff who’s just quit smoking that, now that institution grounds are officially a non-smoking area, I no longer permit staff cigarette breaks during my activities.

I say that grounds are “officially” a non-smoking area because, in reality, no-one listens and even the higher-ups smoke on grounds.

I am a non-smoker and yet I understand the fact that clients want to smoke in the yard. Who are the higher-ups, whether they abide by the rules or not, to prohibit smoking in our own home? Well, outside of it, of course, because yes the non-smokers have a right to a smoke-free home.

Staff, however, are usually the ones who smoke the most and I don’t fully understand that. I mean, yes, it’s an addiction, but it’s also a habit. And, besides it being just plain yuck, staff are taking extra breaks in order to meet their “needs”.

Back to my not permitting staff to take cigarette breaks anymore. Every staff here understands, even the hardcore smokers, but back at the intensive support home, not so. I told this staff about a staff doing my morning activity time slot. At the start of it, she said that it’s long, right? It’s ninety minutes. “Can I have a cigarette?” I told her to stand on my balcony and discard her cig safely. Half an hour later, I was doing a clay project. “You’re now busy with the clay anyway. Can I smoke again?” I reluctantly let her use my balcony again. Half an hour later still, an hour into my activity, she was like “I’m going to need to discuss something with a coworker”. And off she was. When she came back ten minutes later, I told her I didn’t like her essentially taking three breaks during a ninety-minute support moment. “But you don’t have one-on-one,” she ranted, saying that with my “just having extra care” this means she could leave me alone whenever she needed to. And besides, she didn’t need to offer up an explanation to the client for her decisions. Well guess what? Yes, staff do need to justify their decisions to me when these affect my care.

And don’t get me started on the difference or lack thereof between one-on-one and extra care. They’re both just sums of money the institution receives for a client. Yes, some clients have more one-on-one hours or extra care hours or whatever than I do, some even having 24-hour one-on-one. However, these sums of money are based on average amounts of care a client needs. If a client has 24/7 one-on-one (which none of the clients at that home had), it means they on average need one staff with them all the time, but sometimes two and sometimes briefly none. I at the time had seven hours of extra care/one-on-one support a day and my support coordinator claimed that my day schedule at the time spanned nine hours. There are various reasons why firstly this wasn’t true and secondly it doesn’t mean I had two hours of support that wasn’t being paid for, but don’t get me started on that…