…Not Life Experience Deductible

Posted on by Astrid

Hi all. As I shared before, my birthday is next week. I’ll be 39. This means that next week will mark the start of my 40th year on this planet. It isn’t necessarily something I take too seriously, except that my best friend, who is “only” 36, loves to remind me that I’m the older one of us. Then again, life starts at 40, right?

We were joking about age again this afternoon when my best friend came up with a new mantra for me. I’d have to explain here that, for years when I was in the psych hospital, I had a profile signature at the forum my best friend and I know each other from (and at many other autism and mental health forums). It was: “Time spent in psychiatric institutions is not life experience deductible.” With this mantra, I meant to counter the professionals who told me that proper help and treatment, a long-time place to reside, etc. could wait because I was still young. Yes, seriously.

Now the mantra my friend came up with was: “The first 40 years aren’t life experience deductible.” This is actually the polar opposite of “Life starts at 40”.

While I believe that, indeed, the first (nearly) 40 years of my life matter as much as however long I have left here on Earth, I do believe that it’s never too late to create a brighter future. And that doesn’t have to include huge leaps forward. It can include small sparks of joy. In this sense, nothing I go through or accomplish each day is life experience deductible. Yes, it’s incredibly frustrating that things in the care system progress at such a slow pace, but that doesn’t disqualify the meaning of everyday pleasures.

Written for Fandango’s One Word Challenge for today, which is “mantra”. I love doing these little freewrites.

Bittersweet Birthday

Posted on by Astrid

Hi everyone. As you may know, my birthday is next week. It is a bittersweet day in ways that it isn’t for most people. After all, yes, many adults, particularly those who are childfree, no longer celebrate their birthday because they have the money to buy themselves presents and a day to remind yourself that you’re getting older isn’t special to them anymore. It never was to me, as I hated growing up as a child due to all the expectations set on me.

Now though, I no longer mind getting older. In fact, when I turned 30, it felt exciting because I could finally join the over-30s groups on Facebook.

I do still have mixed feelings about my birthday though. I shared more about this last month. My birthday is rather bittersweet. However, bittersweet does include sweet.

For the most part, I like to turn the end of June into a celebration. It’s summer after all, which is my favorite season. This year, I am once again going to make a cheesecake for my fellow residents and treat them to a burger and salad. I am also still childishly excited about my presents. I know, I can buy myself whatever I want. That is, not really, of course, but I mean I have the financial security to buy my own presents. Still, it’s fun to know what others come up with as gifts for me. Yes, even the rather odd thrift store finds my parents usualy come up with. And by odd, I mean that they’re cheaper in the regular store than at the thrift store. I’m not a thrift store gal, but I appreciate those who are.

Sharing this post with Moonwashed Musings.

Shades of Blue

Posted on by Astrid

Hi everyone. This month, the Weekly Prompts Colour Challenge is “blue”. I have written several posts addressing the color blue. It is one of my favorite colors, probably my favorite after purple. Oh wait, now that I think of all the beautiful shades of blue, I actually believe as a general color category, blue is even better than purple. Sorry, lilac.

There are so many wonderful shades of blue. I once took a quiz on Dictionary.com to determine how much I knew about the different words for various blues. The only one I got wrong the first time I took the quiz, was the meaning of “cerulean”. I was unsure when I retook it today too, but remembered that my first instinct had been incorrect back then so selected the next thing that came to mind. And this time, I scored 8 out of 8 correct answers. That doesn’t mean that I don’t tthink cerulean should be purplish.

Since the quiz did not explain every shade of blue clearly, and there are many more that weren’t mentioned in it, I just looked a few up. Since I do have some concept of color despite being totally blind now, I can imagine what colors would look like. No-one can be sure whether I’m correct, but that applies to sighted people’s internal perception of color as well.

Blue is the color I have the most shades of in polymer clay and I don’t even have all of them. I have Fimo blue (true blue, so blue as blue should be, apparently), brilliant blue, pacific blue, aqua, blue ice quartz, blue agate and peppermint, which contrary to common sense is blue not green. I also have Premo cobalt blue and ultramarine blue, as well as Cernit in several shades of blue that I can’t remember. In this sense, it’s interesting to note that I hardly create anything primarily blue out of polymer clay. I think I need to change that.

Blindness Doesn’t Bind Me

Posted on by Astrid

I am blind. This is, in a sense, an advantage. Not because it means I’m more capable in some way than sighted people. Of course, I could be more capable than some sighted people in some ways, but that’s not due to my blindness.

I say my blindness is an advantage in that it allows me an easy explanation for my challenges when I don’t want to elaborate. Other blind people – those in the “competent blind adult” community – may think I’m setting a bad example. Honestly though, I don’t care.

I know blindness shouldn’t bind me. It shouldn’t keep me from achieving my goals. But neither should autism. Or mild cerebral palsy. Or any of my other disabilities alone.

But I don’t want to have to pull my every disability apart to see how it does or does not – or should or should not – limit me. I am not blindness, autism, cerebral palsy or whatnot. And yes, I know I’m more dependent than other people with my diagnoses. But I am not my diagnoses. I am myself and I lead a meaningful life as much as I can. And that includes not letting other people define what that is.

Written for Three Things Challenge #MM75. I didn’t know how to fit in the word “abound” and actually had to look up its definition to be sure I would, if using it, use it correctly.

When Pluto Was a Planet #SoCS

Posted on by Astrid

This morning, I read on a major Dutch news app that a dwarf planet had been discovered on the outskirts of our solar system, reducing the chances that there’s a ninth planet in our solar system to extremely low.

Wait… there are nine planets, right? That’s what I was taught in school and I’m not that old, am I? Or Maybe I am, since it’s been nearly 20 years since Pluto was officially declassified as a planet. It’s now a dwarf planet just like the newly-discovered one, even though Pluto is four times the size of this one.

That brings me to nostalgia in general. That time when Pluto was a planet, when there were 15 million people in the Netherlands… that’s a song, but there are now 18 million. I guess either time flies or I’m getting old or both, since there will always be 15 million people inn the Netherlands and Pluto will always be a planet. Oh, that’s rather ignorant.

This post was written for Stream of Consciousness Saturday, for which the prompt this week is “that time”. I’ve included the Spotify link to the song because YouTube doesn’t seem to work properly.

Like a Rolling Stone… #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday is “favorite place”. I am not a fan of traveling, so I have absolutely no idea what my favorite place to go on vacation would be. I did go on a postponed honeymoon in 2012 to the Swiss town of Zug and it was beautiful. That is, walking through the mountains was quite an experience. The town itself was full of top-notch expensive cars.

We haven’t been on vacation since 2014 and, though my best friend and I (my best friend currently still being my spouse, for those who don’t know) have discussed vacation plans, neither of us is keen on going anywhere, honestly.

I would probably be considered a homebody. Except, what is my home? My staff often refer to the care home as “home” when talking to me, but it still feels off. And though I have no plans of traveling to any exotic locations anytime soon (or ever, considering most truly exotic locations are not easy to get to for someone who hates flying), I wouldn’t consider my room in the care home to be anything close to a favorite place. Or maybe it’s my least hated place out of all. After all, I’ve never truly felt home anywhere. Not with my parents, not in independent living or with my spouse nor in any of the places in the care system I’ve resided in.

I guess I’m like a rolling stone. After all, I’ve never truly connected to any particular place. This feels sad.

Consciously Incompetent This Time

Posted on by Astrid

Over the past few weeks, I’ve been attempting several times to create a polymer clay trinket dish, with no luck. The first time, when I’d finally rolled the slab to the right thickness, it was too small for my trinket dish cutter; the second time, I couldn’t even get the clay to the right thickness without it being horribly uneven; and yesterday, when I actually got the slab to the right thickness and size for the cutter, it turned out that the bowl I used for molding my trinket dish into, was too big.

Several years ago, I’d have been content with my second slab and might’ve used it as a coaster if I hadn’t molded it regardless of the size of the bowl.

I am often reminded of the fact that, according to one of my college instructors, people start at unconsciously incompetent at a new skill, ie. overestimating their abilities, then move on to the stage of conscious incompetence, at which point I believe I’m now with some of my polymer clay, like with the trinket dish. It’s an incredibly frustrating stage to be at, because I constantly give up on projects that I want to pursue because of realizing they’re going to be a massive fail.

At least though, I try to remind myself that I’m not as clueless as I was with card making many years ago, because then I’d happily send out cards a five-year-old could’ve made in exchange for cards by semi-professional card makers.

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

March Memories

Posted on by Astrid

Hi all! Can you believe we’re already halfway through March? I honestly feel that time flies. Today, I want to share some random memories from Marches (is that a word?) gone by.

First, a year ago, I had just recovered from second-degree burns that I sustained in a crisis. Looking back, my life is much better now than it was a year ago, when we were in the midst of a weird idea from the staff that said I had to compensate for every minute I needed support outside of my designated one-on-one hours because of distress. I sort of understand the reasoning, because, at the end of February, I had shared with my behavior specialist and some therapists that, in an ideal world, I’d be able to rely on staff all the time. What I didn’t realize at the time, thanks to all the words about “unsupported time” in my day schedule, is that this is basically already the situation in 24-hour care. Of course, I can’t always expect a staff to show up in no time when I need one, but it isn’t like I’m ever truly supposed to be self-reliant. That’s until that crazy idea about compensating came to be, because, as one of my staff said it, my “unsupported time” was supposedly my structure. Let’s just say I disagree and am so happy that, after a month, the system was abandoned at the end of March again. Now, it’s actually in my day schedule that I can rely on the staff for support when in distress during my times of doing my activities by myself.

Two years ago, I finally had a meeting to discuss my leaving the intensive support home. I’m so very happy I insisted. I remember the intensive support home’s behavior specialist was a bit critical, because, well, I apparently hadn’t left the care facility in Raalte in 2022 completely voluntarily. As it turned out, some staff had been more happy that I’d finally gone than they had admitted. This is somewhat understandable, given that all other clients there had severe to profound intellectual disability and no or minimal challenging behavior.

I can’t believe I’ve been at my current home for eighteen months already. As I share these two snippets, one from 2024 and the other from 2023, I am intensely grateful. I am still struggling at times, but then again I was even at the best of times in Raalte.

Sharing this post with RDP, for which the prompt today is “March”.

Growing Up Emotionally

Posted on by Astrid

Today’s Ragtag Daily Prompt is “when I grow up”. I’m going to be forty next year, so by most standards, I’m considered to have “grown up”. Only by the model that includes life experiences such as working, buying a house, etc., I’m not necessarily truly an adult. After all, though my spouse and I own a house together, buying it was mostly done out of necessity so that I could go into long-term care. I’ve never worked, not even had a side job as a teen.

That being said, in many respects I’m still young at heart. I know everyone my age says so to be cool, but I don’t mean it in a positive way. Rather, I mean it to say that emotionally I’m very vulnerable. Like I shared when discussing emotional development as it relates to intellectual disability (and autism) in 2023, on many subscales of the emotional development assessment used here in the Netherlands, I’m considered an infant or toddler. That doesn’t mean I can’t grow.

When I grow emotionally, I’d like to become more regulated. My psychiatrist used to say that I’d likely experience less emotional dysregulation after age thirty. I’m not sure that’s true in my case. In fact, I’m pretty sure it’s not true. The frequency and severity of my meltdowns has increased, though the duration has lessened significantly. I no longer experience outbursts that last all day. That, I mostly attribute to my staff’s proactive attitude.

I’d also like to be more independent. The problem with this, however, is the fact that my energy level varies significantly from day to day. Because of this, I hardly ever progress in my independence even though I might be able to. The reason is the fact that, if I do something independently once, my staff and others are going to expect me to always be able to do it.

Same for adaptability and emotional regulation: my abilities vary from day to day and sometimes hour to hour. I, for this reason, struggle to really make progress. That doesn’t mean I don’t want to.

Echolalia

Posted on by Astrid

Hi all! I’m officially joining the #JusJoJan fun today, because the prompt inspired me. It’s “echo”.

There’s a resident at my home who repeats everything she hears. I was actually confused when I first got introduced here, because this resident has a very clear, high-pitched sing-song voice reminiscent of staff. When I asked why the staff were saying everything twice, one of them explained that this person wasn’t a staff but a client and she experiences echolalia.

I immediately assumed she’s autistic, but she isn’t. She has Sanfilippo Syndrome, a rare (albeit relatively common in the Netherlands) metabolic disease that leads to cognitive decline. Apparently, this person’s cognitive decline is so advanced that she doesn’t recognize anyone, except for sometimes her parents.

It’s interesting to note that, when I first got here, she always only echoed the staff, not the other residents. Now she regularly echoes me and sometimes other clients too. She still doesn’t repeat it when someone tells her off for talking too much. I think that’s funny.

I, being autistic, sometimes experience echolalia too. When under a lot of stress, I engage in immediate echolalia, like this other client: I repeat what has just been said. Sometimes, I also experience delayed echolalia. When this happens, I notably echo my fellow clients.

When I’m in a mentally good place, I sometimes feel guilty for it, because it feels like I’m appropriating them. That’s not my intention though and, well, I’m not echoing on purpose anyway.