Disabled Ace Day

Posted on by Astrid

Hi everyone. I once again haven’t been active on the blog much. I’ve been listening to a lot of podcasts lately, mostly true crime. Today though, I decided to check out the podcast The Ace Couple. In their most recent episode, which came out today and which I’m currently listening to, the podcast hosts said that it’s disabled ace day today. Ace, for those not aware, is short for “asexual”.

Like I shared when writing my post for coming out day, I’m for the most part asexual. I’m still figuring out where exactly I fit on the asexual spectrum. For those who don’t know, since sexuality isn’t an all-or-nothing thing, asexuality is a spectrum describing anyone who experiences significantly less sexual attraction to other people compared to the general population. People who are not asexual, are commonly called allosexual (“allo” being Greek for “other”). This also clarifies that people on the asexual spectrum, even people who are altogether ace, may experience sexual desire and pleasure.

I do not claim to be an authority on asexuality. Had I been able to be open about my queerness all this time, I might’ve been able to gather more information without feeling guilty. Like I said, I’m still figuring things out.

This is also where disability comes in. Commonly, it’s thought that disabled people, particularly those with intellectual or developmental disabilities, don’t experience the same sexual feelings as non-disabled people do. This is simply not true, although disabled people are more often taught to suppress our sexual feelings. After all, particularly those with intellectual and developmental disabilities are too often seen as “children in adult bodies”. I myself have used these analogies when describing emotional development. Because it finally enabled me to get sort of okay care, this analogy appeals to me even though it’s inherently ableist.

When a disabled person identifies as asexual or somewhere on the ace spectrum, it is then too easily thought that this is because of the way the person was raised or educated. This is the counterstereotype I so often used to talk about in my early days on WordPress (oh my, I need to bring some of those old posts back): if we want to defeat the idea that disabled people can’t have sex, asexual disabled people could be seen as harming the cause, similarly to how I’m seen as harming the cause for community-based support by living in an institution. In reality though, prejudice and oppression are systemic, not individual. Besides, it’s not our job as marginalized people to fit ourselves into society’s neat boxes, whether these are stereotypes or counterstereotypes or other ways of telling us who we are and how we should live our lives.

This doesn’t mean I’m not influenced by prejudice. Regularly, I think I’m too disabled for a relationship and that’s why I’m ace. I’m pretty sure that’s not true, as I do have many years of being in a relationship with my wife before either of us clarified our authentic needs and wants to the other. I remember writing a post back in 2008, which I’m not going to bring back here (don’t worry, wife!), in which I described not knowing whether I was actually attracted to her and thinking I certainly wasn’t interested in sex. If that doesn’t tell me I’m ace, what does?

The more I write, the more memories confirming that I’m indeed asexual, come to mind. I was quite repulsed as a teen, purposefully skipping the biology chapter on reproduction and refusing to read the sex ed material that my parents brought me at around age nine. Then again, I’m pretty sure my refusing to read it was because I hated reading Braille at the time and my parents made quite a big deal of me reading this book.

However, what if my asexuality is in fact related to my being multiply-disabled, including autistic? Does that mean I’m doing the disabled or autistic communities a disservice? I don’t think so, because like I said before there’s no value in dictating who I am. Besides, as someone who lived for twenty years not knowing she’s autistic and yet who was autistic all along, chances are we’ll never know for sure.

I’m joining in with #WWWhimsy.

Neurodivergence and Emotional Dysregulation

Posted on by Astrid

Hi everyone. On Monday, I listened to an episode of the Navigating Adult ADHD podcast. It was on emotional dysregulation and it’s been on my mind ever since.

I don’t have a diagnosis of ADHD, but have wondered for years whether my emotion regulation issues are “just” autistic meltdowns, whether I have borderline personality disorder like my psychologist in the psychiatric hospital used to believe, or whether something else is going on. So far, I haven’t found a satisfactory answer and, with that, I have not found something that helps.

I tried a ton of medications but none truly helped me, except for maybe my antidepressant. That is, obviously my antipsychotic did lessen my emotional outbursts, but it didn’t do so in a pleasant way. In fact, I only felt irritability or I felt nothing. That’s not emotion regulation but being numbed down too much.

I tried dialectical behavior therapy, which I still believe could’ve been helpful if the clinician hadn’t been so horribly invalidating. I mean, there’s quite a world between going along with every single emotion I describe without question (which I realize could be counterproductive) and telling me, albeit implicitly, that my entire way of experiencing things is invalid. I haven’t been involved with DBT for long enough to know whether it in itself is invalidating or whether it was just the clinician being judgmental.

In the podcast, the speaker described six ways in which emotional dysregulation can show up. I related to all of them, though some more than others. For example, my low frustration tolerance is truly debilitating. So is my inability to calm down. I literally still fret over things that happened at the intensive support home and these influence how I react to my current staff. My spouse and I also regularly fight over both of our (but more so my) inability to let go.

The things I relate less to, interestingly, are things I see as relatively “positive”. For example, I do get slightly over-excited at times, but not to an extreme degree. Then again, the fact that I don’t experience it to an extreme degree, is probably why I see it as “positive”: after mulling over negative things for weeks, I’d love something to get overly enthusiastic about. In reality though, finding a new hobby and buying all the “needed” supplies within hours, isn’t actually good for me financially. I just wish I’d experience that rush of excitement. Then again, when, rarely, I do, it often leads to even lower lows afterwards.

I’m joining in with #WWWhimsy.

Neurospicy Burnout

Posted on by Astrid

Hi everyone. A few days ago, I listened to a podcast episode on autistic burnout. It’s the most recent episode of Beyond Chronic Burnout, a podcast for autistic women (and other marginalized genders, I hope) and their helping professionals. It discussed the Spicy Pepper burnout questionnaire, which apparently is a questionnaire to determine your level of burnout. I got overloaded trying to find the actual questionnaire amid all the ads etc. and it looks like the website it was published on, isn’t particularly screen reader friendly, so I wasn’t able to take the test. However, from the descriptions discussed on the podcast, I believe I’m in quite a significant burnout and have been for, well, years.

What is autistic burnout, you might ask? Autistic burnout is like regular burnout from being overworked, but it is really more like being overworked living life in a world not designed for autistics. As I have said for many, many years, just living in a neurotypical world is hard work for me.

I want to clarify that autistic burnout is often amplified by co-occuring conditions such as ADHD. In fact, writing this just reminds me of something I read several years ago that said that having fibromyalgia, which is often agravated by stress, is often correlated to ADHD. This is why I refer to neurospicy burnout.

The podcaster claimed that the first signs of burnout in autistics usually appear between the ages of four and six and many autistics experience their first actual burnout between the ages of six and ten. This was hugely validating. I, at age five, fell ill with what my parents claim was the flu, but it did lead them to get me into special ed quicker than originally intended. Age seven is always when my parents claim I changed from a cheerful, happy child to angry and depressed. This correlates with my having to start learning Braille, so according to my parents I then became aware of my declining vision. This is probably correct, but it doesn’t mean that my difficulty accepting my blindness was the only or main problem.

The first warning sign of autistic burnout, the podcaster says, is suicidal ideation. Oh my, can I relate! I honestly always thought that the first sign of burnout, whether neurospicy or work-related, was exhaustion. That with the fact that I react to overload with overactivity and irritability, always made me believe I’ve never had “real” burnout symptoms. Now I realize that I may not have fully collapsed (yet), but I do certainly experience burnout. And have for, well, my entire life since I was seven, I guess.

Reading, Watching and Listening Lately (January 6, 2025)

Posted on by Astrid

Hi everyone. Today I’m sharing what I’ve been reading, watching and listening to lately. I’m joining It’s Monday! What Are You Reading? (#IMWAYR). Most of this post will be dedicated to books, but I’m also sharing a little of my recent travels through YouTube and podcasts.

Reading

I saw the book Camp Damascus by Chuck Tingle recommended online when someone asked for queer autistic characters in young adult/new adult lit. It’s horror, which I rarely read, but for some reason its description appealed to me. I am surprised to say that I’m already 25% in even though for me it’s a pretty long book. One thing that already disappoints me a bit is that, 25% in, I still seem not to have a clue of what happens.

Other than that, I’m mostly just paging through my over a dozen collections of smoothie recipes. I will be buying new ingredients tomorrow.

I don’t do these posts every week, so for my recently finished reads, I’m sharing a book I finished just before Christmas: Murder on Christmas Eve (A Dodo Dorchester Mystery, #6) by Ann Sutton. It is a cozy mystery set in early twentieth century England. I didn’t initially realize it was historic and I hadn’t read the other books in the series, so it was a bit hard to get into, but it was an intriguing story.

I still have half a dozen books I haven’t finished but intend to finish… someday. That being said, I honestly have no idea what I’ll be reading next.

Watching

Yesterday, I watched a YouTube video from an American guy who lives in the Netherlands, sharing ten things (American) tourists should not do when visiting Holland. Oops, that’s one of them: calling our country “Holland”.

I also have been watching some snippets of 3FM Serious Request’s feature on metabolic diseases. 3FM is a Dutch public radio station and Serious Request is an annual fundraiser event, this year for MetaKids, a Dutch foundation that funds research into metabolic diseases. Since one of my fellow residents has Sanfilippo Syndrome, which is a metabolic disease, I was intrigued to learn more. I didn’t donate though.

Listening

On New Year’s, I watched a fascinating episode of the Real Survival Stories podcast on a paraglider who landed in a storm and was pulled up to 10,000m into the sky. It was truly chilling!

Now I realize most of the things I enjoyed lately are on the dark side. I don’t care though. I do usually hope for good endings. If you’ve read Camp Damascus, please don’t spoil it for me.

#WeekendCoffeeShare (November 16, 2024)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare again. It’s nearly 9PM, so no coffee for me. I might make myself a cup of bedtime tea once I’m done with this post (or rather, have the staff make it for me). There’s of course always water too. Let’s chat.

If we were having coffee, first I’d talk about the weather. We’re still having an unusually mild fall season, with daytime temperatures at or around 10°C all week. We were supposed to get rain today, but I haven’t felt any.

If we were having coffee, I’d tell you I’m still struggling, but not as much as I was last week. On Tuesday, I spoke with my support coordinator and explained why I felt the Center for Consultation and Expertise may be able to help. She didn’t really respond, but I’m hoping she’ll take things up with the higher-ups.

If we were having coffee, next I’d tell you I’ve been learning more about autism and ways to support myself and for my staff to support me. There’s this support method called The Essential 5 in English. It was originally developed here in the Netherlands by Colette de Bruin and here has the catchy name “Geef me de 5” (which translates to high-five in English). I hadn’t ever remembered the essential five correctly, but they’re ways in which one’s activity should be structured: What, When, Where, Who and How. If there’s no “What”, as in my day schedule’s “alone time” or even during my supported activities (because I have to choose one on the spot), how can the other four be clear? This is something I struggle with a lot, as now with the shifts assigned to my day schedule, the “Who” is often too rigidly clear but there’s still no “What”.

I listened to a podcast episode by Geef me de 5 on empty time and autism and had a staff listen to it with me too. It was very eye-opening.

If we were having coffee, then I’d tell you that, on Tuesday, I went to me and my spouse’s house for my spouse’s birthday. We also stopped by Ikea and my in-laws’ house. We originally wanted to order pizza or fries, but both the pizza place and the snack corner were closed. My spouse eventually put fries into the Airfryer.

I also took a few things from our house back with me to the institution. First were a number of mounted rubber stamps I used to use for card making. I’m not 100% sure what to do with them now, particularly since most have old ink on/in them, but, if I can clean them, I can re-use them for stamping on polymer clay.

Then I also took a jewelry box with me that contained a number of rings, bracelets and necklaces. One of them was the ring with an amethyst in it that was passed down to me from my late grandma. Unfortunately, that one, as well as most other rings, are too big for me.

If we were having coffee, I’d share I have a ton of creative ideas floating around in my mind, but struggle to get to actually starting any of them. For example, I want to start making my own jewelry again, particularly bracelets and necklaces. I am still in doubt as to whether earrings are suited for me at all, as sooner or later I’ll almost inevitably develop an itch from them.

Anyway, I remember how I used to enjoy making jewelry and I think that with my current day schedule and staff, I should be able to pick the hobby up again.

So far, I did create one polymer clay pendant. I think I like it quite a lot, but still need to sand it before I can actually use it.

If we were having coffee, lastly I’d share a nutrition and exercise update. I saw the dietitian on Wednesday and endured the mandatory talk about all the opportunities to snack and get treats during the holiday season. Quite frankly, if I’m in the mood for snacking, I don’t care whether there’s a festive reason for it. I’m also happy to report I’m still on target weight-wise and intend to keep it this way.

However, I haven’t been all that physically active over the past week. I did meet my goals on my Apple Watch, but things could’ve been better. On Thursday, I had an opportunity to go swimming, but I felt too tired. I now remember that I was supposed to do my physical therapy exercises this afternoon but forgot. Going to do those now!

Reading, Watching and Listening Lately (September 2, 2024)

Posted on by Astrid

Hi everyone. I originally intended to do a reading wrap-up, but then decided that I want to include things I’ve watched or listened to as well. I hope that means my post is still welcome with It’s Monday! What Are You Reading? (#IMWAYR). I’m also joining Bookish Bliss, Musings and More.

Reading

I said this a few days ago already when writing about my love of memoirs, but I recently started reading a book by a relatively new foster care momoirist. The book is called Jacob’s Story and is written by Louise Allen. I think that title is horribly unimaginative, but the story is good. Louise mostly writes from her own perspective, but the prologue parts are written from other people’s perspectives.

I’m also reading a children’s book, Shamrock’s Seaside Sleepover (Unicorn University, #3) by Daisy Sunshine. The first two books in the series, I finished in one sitting but I apparently didn’t feel as much in tune with my inner child when first picking this one up.

Lastly, I’ve been diving deep into the Enneagram again by reading The Complete Enneagram by Beatrice Chestnut. I’m not a Christian, so most Enneagram books don’t fully speak to me as they’re Biblically-based. I still, as a spiritual seeker, find some elements to be useful though. However, this book is totally accessible to people of all spiritual or religious walks of life.

Watching

I don’t currently have a subscription to any streaming services except for YouTube Premium. I also haven’t watched anything of note on YouTube recently.

Listening

First off is the podcast The Art of Growth. I listened to an episode published some months ago in the series Nine Love Languages, specifically the one on type 4. This was also what got me into reading Chestnut’s book.

I also am a lover of true crime podcasts. The episode of the podcast Cold Case Files I listened to recently had me totally chilled to the core. It’s called The Perfect Murder.

I usually listen to podcasts on the app Downcast. I used to love Overcast, but they stupidly revamped that app so I no longer use that one. Besides, though both apps are in English, only on Overcast does VoiceOver recognize that, which is a drawback since it then starts reading the titles of Dutch-language podcasts with a strong English accent. I’d rather have it the other way around, as on Downcast. Both apps will let you manually add podcasts from a URL, but both have a search feature too, through which I found the podcasts I mentioned.

Lovin’ Lately (July 14, 2023)

Posted on by Astrid

Hi everyone. It’s been forever, probably years, since I shared a compilation of my favorite things. With my birthday just over two weeks ago and all the lovely presents I got, I thought it’s about time. I also discovered some other lovely things. Here goes. I am joining in with Friday Favorites.

1. Lots of polymer clay. Plus some lovely cutters to use with it. I got twelve small, one-ounce blocks of Fimo from my spouse, as well as four two-ounce blocks of Premo and a large block of white Premo. I already opened the Premo in the color 18k gold. Unfortunately, the pieces I created using it, were ruined in the oven.

From my parents, I got a box full of 24 small packets of a budget brand of polymer clay. I also got several cutters. One of them was a unicorn and I’ve really been loving creating pendants using it. Here is the first one, done using the budget brand polymer clay. I was convinced I’d used lilac clay, but it’s clearly blue and that’s not because the clay changed color in the oven. Apparently my staff with whom I did the pendant is slightly color blind.

2. Beads. I got some lovely glass beads from my mother-in-law. Some of them are in the shape of animals, such as butterflies, pigs and ladybugs. My spouse uses the ladybug emoji as a nickname (nick-emoji?) for me, so these are extra fitting.

3. Podcasts. Because as of iOS 16.5, my Braille display freezes when using book apps, including the default iPhone one, I’ve had to find other ways to occupy myself. I started looking at podcasts. A favorite is the Enneagram & Coffee podcast. I especially loved the episode on attachment theory and the Enneagram, which I listened to just a day or two after writing my post on attachment issues last Sunday. I was right to think most Enneagram type Fours lean towards anxious attachment. So do I.

4. My new nightgowns. I bought them at Hema, a department store my spouse and I visit almost each week we’re in Apeldoorn, a few weeks ago. Both of them are so comfy and they look good too.

5. White chocolate peanut rocks. Not sure if these exist in the English-speaking world too, but peanut rocks are basically chunks of chocolate filled with peanuts. They usually come in dark and milk chocolate varieties, but I’d never seen them in white chocolate form. Until last week, that is. Since my favorite type of chocolate is white chocolate (and yes, I know chocoholics say white chocolate isn’t real chocolate), I just had to buy them. And oh boy, are they delish!

What have you been lovin’ lately?

Getting Older, Being Happier?

Posted on by Astrid

Today’s prompt for Friday Faithfuls is aging. I used to think aging was scary. Even at the early age of four, I didn’t want my classmates to sing in a birthday song that I was growing up.

Then, a few years ago, I heard an episode of All in the Mind, an Australian psychology radio show (I listened to it as a podcast), about aging. In it, people were discussing the positive aspects of getting older and mentioned that, for people who got to age ninety or beyond, the happiest age they’d ever been in their entire life was 82. How they got to such an exact number, I don’t know, but I’ve since clung to that number. It helped that my assigned day activities staff at my old care home always said she was going to live to age 93. Since she is eleven years older than me, we had this inside joke about the two of us meeting up near the end of our lives when she was 93 and I was at my happiest ever, ie. 82.

There actually is, or so the people on the show said, some logic behind older people being happier than younger people. The reason is the fact that the amygdala, one of the parts of the brain responsible for registering fear, shrinks as we age.

Also, many people become more resilient as they experience more of life. Whether this is a biological, social or psychological thing or more likely a combination of all three, it does mean older people may be generally happier than those in their twenties and thirties, for example. Borderline personality disorder, also known as emotionally unstable personality disorder or emotion regulation disorder, of which I have some traits, tends to lessen as people get older as well. This lessening of symptoms usually starts in a sufferer’s early thirties. Indeed, though I cannot say I’m necessarily happier now that I’m nearly 37 than I was ten or twenty years ago, I am generally more emotionally stable.

Activities I’ve Enjoyed Lately

Posted on by Astrid

Hi everyone. I’m feeling a bit uninspired, but I feel in the mood for a positive post. Not because I feel particularly good – not very bad either though. I’m going to share some activities I’ve enjoyed lately. Here goes.

1. Yoga. Well, yoga without the fluff. I have been doing physical therapy for a few weeks now to help with my back pain. Though initially it was my enthusiasm for yoga (which the physical therapist casually mentioned) that got the therapist to think I might benefit from it, I soon found out that all the breathwork and need to feel present in my body was rather overwhelming. Instead, last Monday, we just did the exercises and that’s it.

2. Jumping on the trampoline. Today, the physical therapist had managed to borrow a side-by-side bike, so we were able to ride it to the large trampoline on the other end of institution grounds. I initially struggled a bit, but this was mostly due to my staff and the physical therapist trying to support me whilst on the trampoline. Once I started to jump on my own, it went really well.

3. Diffusing essential oils. It’s too bad the site I discovered with literally thousands of blends on it, is probably kind of shady, since you need to pay to get access to the blends (after a week’s trial period). Not that I create new blends everyday, of course, but I just love looking at everything. I did just put one of today’s featured blends into my diffuser tonight. Not sure yet what I think of the smell, but then again it usually takes a while for the scents to properly blend.

4. Playing dice games, particularly Yahtzee. I might try to introduce my staff to some new games soon.

5. Polymer clay, of course. Today, I put the unicorn I mentioned on Monday into the oven. No picture yet, but I did finally photograph the polymer clay ladybug and octopus I created several weeks ago. Here’s the ladybug. I did the main parts using black Fimo, used Premo in the color cadmium red for its scale or wings or whatever the dots are on, and used white Premo for its eyes.

Polymer Clay Ladybug

6. Listening to podcasts. I have been searching for podcasts I might enjoy. For some years, I subscribed mainly to true crime and Christian podcasts, but I’m no longer a believer and true crime honestly doesn’t really speak to me either. Now, I mostly listen to podcasts on healing from trauma, the enneagram and related topics. I also found several on neurodiversity. I particularly loved the SquarePeg podcast.

In addition to these, I love listening to bedtime stories for kids on both podcasts and YouTube. I might someday try sleep stories for adults too, but don’t really see a reason for it as of yet, other than the fact that I’m an adult, that is.

7. Creative writing. This is something I really need to do more often, be it on the blog or in my Day One journal on my iPhone. I really enjoy trying my hand at writing based on prompts or trying different styles of writing. I am not a good creative writer at all, but practice makes perfect, right?

I am linking this post to #WWandPics.

Gratitude List (November 28, 2020) #TToT

Posted on by Astrid

Hello everyone. Like I mentioned yesterday, I have not been more grateful than I am now in a long while. Part of the reason is my recent depression, but part is also my increased attitude of gratitude. For this reason, I am trying to make posting about gratitude a weekly habit again. As always, I am linking up with Ten Things of Thankful (#TToT).

1. Quiet dinners in my room. Last week and early in the week, I was very stressed out about needing to eat in the communal room with the other clients. This has been a stressor for me for a long while already. I was given the opportunity to eat in my room if I didn’t cope in the communal room, but was struggling to say I didn’t cope on time. For this reason, me and the staff decided I for now will always have dinner in my room. Yesterday, a staff noted that I eat much slower now.

2. Extra staff. I may’ve mentioned this before, but there is now an extra staff member to support me in the evenings. I am not yet sure how they will cover this financially, but we’ll see. Today, I thought there wouldn’t be an extra staffer, but thankfully there was.

3. Podcasts. I’ve mainly been listening to church services. I am so grateful for my podcast app that enables me to listen to church services from all over the world. Oh and of course also other podcasts, like the Parcast Network originals.

4. The YouVersion Bible app. I have only a three-day streak so far, because I missed one day of Bible reading on Wednesday. I am determined to make this streak much longer though. Right now, I’m on day six of a seven-day devotional on forgiveness.

5. Soaping supplies. My day activities staff ordered 3kg each of white and clear soap base as well as a few micas (powdered colorants). She already ordered them early last week, but they finally arrived last Thursday. In addition, my husband brought my Christmas tree soap mold. I am really looking forward to soaping again.

6. Cake decorating. In addition to the extra staff in the evenings, there’s an extra staff in the morning on week-ends. The one who had this shift today, asked me earlier in the week whether I’d like to decorate cupcakes with her today. We ended up using regular slices of cake, not cupcakes, because these are easier to decorate. I loved it.

7. Beautiful skies and sunsets. I regret not having taken a photo of the pink sky we had on Monday. I didn’t really see it, but did see some and loved the staff’s description. Also, on Sunday, I saw the sunset. This was really cool.

8. Eating lunch in the car. My husband came by this afternoon to take me out to lunch. Since all restaurants and such are closed due to COVID, we drove to a Subway drive-through. We each had a chicken teriyaki wrap. It was delicious!

9. Homemade wraps. Okay, they weren’t as good as the Subway chicken teriyaki one, but they were good too. We made wraps with chicken and lettuce on Monday and, because we had some wraps still left over, made some more with minced meat and beans on Thursday.

10. Good talks with my husband. He keeps me interested with his knowledge of theology in particular.

What have you been grateful for lately?