The Wednesday Hodgepodge (February 14, 2024)

Posted on by Astrid

Hi everyone. Happy Valentine’s Day! It’s Wednesday and I’m joining in with the Wednesday Hodgepodge. Here goes.

1. What does love mean to you?
To me, it means thinking that (and acting accordingly) someone is special to you. This special someone could be God, someone else, but it could be yourself too. I mean, I know that in many traditions, it is commonly believed that to love is to value someone higher than yourself, but I do think self-love is love too. In fact, I recently commented on someone else’s blog that, if everyone loves themselves, no-one will be unloved.

2. Is love blind?
I am blind, so my love certainly is. However, whether love in general is blind, I honestly wouldn’t know. I’m not even 100% sure what this expression is supposed to mean. Probably something along the lines of love preventing people from judging the person they love. Which would be weird, since justice is also characteristically thought of as blind. Oh well, maybe it means love prevents people from judging others based on appearance. In that case, as someone who has never been attracted to anyone for their appearance (in fact, I didn’t know my now spouse’s hair color until we’d been together for several months) but seems to be in the minority here, I cannot be trusted to give my representative opinion on this.

3. How do you remember Valentine’s Day as a kid? Do you have any special plans for the day this year?
I don’t remember it as a kid. In fact, I don’t think back in the mid-1990s, it was a thing for kids here in the Netherlands. In high school, I do remember kids handing out roses and can vaguely remember once having gotten one, probably as a prank.

My spouse and I aren’t celebrating this year. In fact, though we used to give each other small presents each Valentine’s Day, this year, since we both have a lot on our minds, we decided to take the pressure off by agreeing we’d give each other presents whenever we felt like it. I honestly feel that, in a committed relationship, love is an everyday thing. If you need Valentine’s Day to remind each other you still love one another, I doubt the relationship is going to last.

4. Are you a fan of the movie genre known as “rom-com”? What’s your favorite (or one of your favorites)?
I’m not a movie watcher, so no. In books, I do like them occasionally but I wouldn’t say I’m a fan.

5. What’s something you recently put your heart into?
Nothing. I’m struggling a bit, so I don’t feel inspired for any bigger (or even smaller) projects.

6. Insert your own random thought here.
I enjoyed a great Thai meal out with my mother-in-law yesterday evening. We went to Buddha Garden, the same restaurant in Apeldoorn I’d been to with my spouse and parents for my birthday. The food was just as delicious as it’d been the last time I went there.

Finding My Crafty Tribe #JusJoJan

Posted on by Astrid

I first started out crafting as an adult in 2012. Back then, it was card making. Well, let me tell you, picking that craft wasn’t the wisest choice I could’ve made. I’m not saying blind people cannot do card making per se, but I for one could not. And, even though at first I was supported in the process by my fellow card makers in what were then still E-mail groups, criticism quickly grew.

Then came jewelry-making. Same thing really. Though I can string together a basic necklace or bracelet and I don’t need kid-level beads for it, I never moved beyond that. I did make the wise choice of not participating in swaps or the like, like I had done with card making.

For a while, I participated in the trend of rainbow looming. Remember that? It’s so 2015!

Then came soap making. Though I can create a simple melt and pour soap, the fun really disappeared quickly because I never moved beyond that and the only thing I can experiment with are different scents.

And then – after a few steps along the way that I decided to skip for brevity’s sake – came polymer clay. Though I am still a beginner at that too despite having worked with the medium for 2 1/2 years and will most likely never move beyond beginner stage, I feel more like this is a medium in which I can use my creativity. Much like with card making originally, it’s a very versatile medium even for total novices.

Within the polymer clay community, I do have my tribe that I stick to. For example, there’s the Dutch polymer clay Facebook group, in which most members and all admins are incredibly supportive of me and my work. In February of 2023, I helped think up the theme for the monthly challenge. It became “unicorns”, of course, which was probably a little too narrow, as I was the only one who ended up participating. However, I do love the fact that the other members do consider me a valued contributor to the group.

This post was written for #JusJoJan, for which the prompt today, coming from me, is “craft”.

I Am (Not!) 154

Posted on by Astrid

Hi all. Today’s topic for Friday Faithfuls is IQ testing. This topic is very dear to my heart, as IQ tests have often been used and even more often misused to determine my entire life path.

When I was twelve, I had an IQ test administered to me. It was the verbal half of the Wechsler intelligence scale for children (the performance half can’t be administered to me because of my blindness). On this verbal IQ test, I got an overall score of 154. According to the educational psychologist writing the report, this is a sign of giftedness.

There were several problems with this assigned IQ score. For one thing, like I said, it’s just a verbal IQ score. The year prior, another ed psych had tried an intelligence test for visually impaired children which utilizes non-verbal components, but had given up on the test midway through because I got too frustrated. This ed psych had also administered the verbal half of the Wechsler scale, but her report doesn’t give an IQ number.

Another thing, which you might figure out from my previous paragraph, is the possibility of a retest effect, since I took the exact same test twice in a year. The ed psych that labeled me with an IQ of 154 did try to find out whether this had actually happened. He asked me whether I had been told when taking the test the last time which answers were correct and which weren’t. I had, in fact, with some, and besides, my father had given me extensive advice on how to answer some questions even more cleverly than I had done. However, I knew the purpose of this assessment: to get the green light for me to go into mainstream, high level secondary education rather than special ed for the blind. I wasn’t at the time really sure whether that’s what I wanted, but my parents did and I, being twelve, didn’t question their authority. So I said “no” and the ed psych concluded there was no retest effect.

I don’t doubt that I have an above-average verbal IQ. But 154, in my opinion, is probably too high. Besides, verbal intelligence is what you need to succeed in traditional schoolwork. What you need to succeed in life, is more related to performance IQ, if you ask me.

Even now though, nearly a quarter of a century later, the number 154 pops up here and there and everywhere with regards to me. Professionals keep assigning new dates to the original IQ score, calling it a total rather than verbal IQ, and making more nonsense out of these ever-intriguing three digits.

I have tried to talk to the behavior specialist about this. What I really want is to be re-evaluated. Not just with respect to (verbal) IQ, but with respect to other things too. She for now only agreed to write a note by the IQ score of 154 saying that it dates back 25 years.

You’d assume that, in intellectual disability services, it wouldn’t matter whether your IQ is 100 or 150, since it means no intellectual disability regardless. However, several of my current staff have admitted being wowed at my IQ score before they got to know me. I hate that the most, being reduced to being 154.

The Wednesday HodgePodge (October 18, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday once again, so time for the Wednesday HodgePodge. Here goes.

1. What’s something small you tend to sweat even though you know you shouldn’t?
Hmmm, I tend to get nervous and frustrated about a lot of things that are probably minor to others, but to say they’re things I “shouldn’t” sweat, feels a bit invalidating. I mean, I could choose the situation where staff randomly switch up who is going to support me and as a result a staff I didn’t expect shows up in my room. This often feels minor to the staff, but honestly I think they don’t know what it’d be like to depend on an almost countless number of random staff for your everyday needs.

2. October 17th is National Pasta Day…do you like pasta? What’s your favorite? Cooked at home or eaten in your favorite Italian restaurant? How often do you make/eat pasta?
I love pasta. My favorite is either penne pesto or macaroni Bolognese. I know, in the U.S. it’s spaghetti Bolognese but even that isn’t originally Italian, as it’s a combo of Naples’ spaghetti and Bolognese sauce. The way I understand it, in Bologna they eat their recipe only with tagliatelle.

I enjoy my pasta mostly home-cooked. At my old care home, we’d get home-cooked meals on weekends, which was awesome. Here, we get meal delivery service meals each day, but I already agreed with one of the staff that I’ll be helping her cook macaroni Bolognese on the 28th.

3. Do you consider yourself a spontaneous person? Explain.
No, not at all. And usually when I try to do something spontaneously, it means I’ve forgotten something else and I end up majorly messing up.

4. Who are some of your heroes? Tell us why.
Do people who are no longer alive count? In that case, my paternal grandmother, of course. Some of the autistic activist pioneers, like Mel Baggs and Cal Montgomery too. I admire their work in standing up for their and all of our rights to an actually meaningful life.

5. Let’s wrap it up with something light…Taylor Swift…are you a fan? On a scale of 1-10 how much so? (1=who’s Taylor?, 10=a true Swiftie, seen her in concert more than once). If you’re a fan what’s your favorite T. Swift song?
Uhm, 2 I guess. I’ve heard of her. I’m not a fan, but it’s not about her. The thing is, I’m not a pop music fan at all. In fact, I rarely listen to music except for soothing instrumental music when trying to fall asleep. I honestly couldn’t name any of Taylor Swift’s songs if I had to.

6. Insert your own random thought here.
I want to give a shout out to the app Be My Eyes and its AI-based image description component Be My AI. Until this was introduced several weeks ago, all we blind people had were Seeing AI, Envision AI and some other apps that did rather generic image descriptions. Be My AI, on the other hand, does a rather detailed description of images. I can’t copy an image description here because for some stupid reason I can’t get it to write its descriptions in English, but let me just say it’s great.

How Sensory Seeking Manifests in Me

Posted on by Astrid

As those who visit my blog regularly will know, I am autistic. My assigned staff put “highly sensitive” rather than autistic on my basic info sheet. This isn’t necessarily incorrect, but it is definitely incomplete. Not just because autism encompasses more than sensory processing challenges and because the hyped-up term of “highly sensitive” doesn’t come close to describing my level of overload, but also because in certain ways, I am not hypersensitive at all. Today, I want to talk about the ways in which I am, in fact, a sensory seeker.

The main aspect in which I’m a sensory seeker, is reflected in the way I approach food. I love love LOVE spicy food. I also love crunchy food. I can’t stand mash, because that is about the polar opposite of both. Honestly though, I find the texture matters more than the flavor, since mash didn’t get better with lots of black pepper on it and I can handle bland yet crunchy foods.

I also chew on hard candy. Like, I’ve tried sucking on it, but I really can’t manage to do that for more than a few seconds before I need to break the candy. Another example, but I’m not sure whether this is sensory seeking or lack of proprioception and/or coordination, is the fact that my staff tell me my spoon always clanks against my teeth quite loudly. I also realize now that drinking my coffee quite hot is probably a sign of being a sensory seeker.

With the sense of smell, I have a love/hate relationship. I love my essential oil diffuser, but don’t usually wear perfumes and can’t really stand anyone else wearing them.

In the tactile sense, I’m definitely a sensory seeker. This doesn’t mean I like all kinds of touch. I mean, I can’t stand it when people unexpectedly pat me on the back. Truthfully though, it should really go without saying that you should never touch another person without asking them first.

However, I love tight hugs, or used to before I broke my collarbone in 2019, which never properly healed. I also love to be rough when brushing my hair and am probably a bit rough when brushing my teeth too. When I wear my hair in a ponytail, it has to be tight too. And my shoelaces can’t really be tied too tightly. And yes, my spouse took up the challenge, only to tell me that, even though I didn’t think they were too tight, they actually were.

I of course need to mention my weighted blanket here too. It is 12kg, which is between 20 and 25% of my body weight. That’s on the heavy side as far as I’m aware. Of course, I got it when I still weighed nearly 20kg more than I weigh now, but then I’d often end up adding another weighted blanket on top of it.

Another aspect of sensory seeking I need to mention is being in constant motion, even if it’s small movements with my fingers or toes. I am not diagnosed with ADHD, though sometimes I think I could have it. I wasn’t extremely hyper as a child – in fact, my parents would describe me as a quiet child. However, I was definitely jumping onto lots of things. I no longer do this, but mostly because I can’t due to my decreased mobility. Now that I think of it, honestly I’m pretty sure that my need to walk a lot, is also a sign of sensory seeking and/or hyperactivity.

With respect to the sense of sound, I’m not generally a seeker. I do listen to soothing music on my music pillow when trying to get to sleep, but that’s it. I can’t stand background noise. Like, some staff suggest we have music on in the background while we play games, but I really can’t concentrate then.

Lastly, of course, is the sense of sight. I’m blind now, obviously, but when I was younger, I still had some sight. I definitely was a sensory seeker when it came to the visual modality. The most striking example is the fact that I’d often make shadows on my desk with my hands and look at them.

There are many other ways in which I express sensory seeking, but you get the idea. All this being the case, don’t discount my sensory overload just because I can be a seeker in other circumstances.

My Random Musings

Also linking up with Senior Salon Pit Stop.

The Wednesday HodgePodge (June 28, 2023)

Posted on by Astrid

Hi everyone. I haven’t touched the blog in a few days once again. It’s for partly different reasons than last week this time though. The different reasons include the hustle and bustle of my birthday. It’s over though so today I’m back joining the Wednesday HodgePodge. Here goes.

1. What’s one thing you’re excited about in the coming month?
The last bit of my birthday celebrations when my mother-in-law visits me next week. We couldn’t visit my in-laws on Sunday. That is, technically we could, but since my mother-in-law was on call for the animal rescue service she volunteers for, it would have been quite boring for me.

2. What was your life like when you were ten years old?
It was a very difficult year. I turned ten on June 27, 1996. The day before my tenth birthday, I had my first out of what turned out to be only four sessions with a play therapist/educational psychologist. Given what I remember of those sessions, I wonder whether the therapist saw signs of autism back then. Either way, I’m pretty sure my parents decided after those four sessions that it was useless to continue. Fast forward to the end of my year of being ten, June of 1997, I had a psychological evaluation supervised by the same ed psych. This, and the recommendations that came out of it, led to my parents finally falling out with the school. Oh, how I wish I hadn’t been loyal to my parents back then…

3. What’s something from your childhood you still enjoy today?
Being creative, although not in the same ways. That is, I did love playing with play-doh (which one might say is somewhat related to polymer clay, even though real polymer clay artists will punch me in the stomach for saying it) as a young child. I loved drawing more though, something I obviously am no longer capable of. One thing I want to say though is that, even though I’m now totally blind, I still appreciate colors.

4. What state (that you haven’t been to) do you most want to visit? Tell us why.
I haven’t been to any U.S. states and honestly have no interest in visiting them anymore either. As for a country I’d like to visit that I haven’t been to: Sweden.

5. Do you like to drive? Tell us how you learned to drive.
Uhm, N/A. I don’t drive, as I’m blind. That being said, I doubt I could’ve learned had I not been blind, because my processing is about as screwed as can be.

6. Insert your own random thought here.
Today, I created a polymer clay flower pendant in just half an hour. I loved the entire process and it turned out quite good. In fact, the only thing I dislike about it is the fact that the eyepin’s direction is off.

I really need to be showing more of my creations on here, I think, as social media hardly work for me. I mean, I do try to use Instagram, although I wish it were more of a microblogging service with the pictures being optional. Then again, that’s what Twitter is supposed to be, but then again I despise Elon Musk. Oh well, the perfect social media platform doesn’t exist.

Goodbye to Yet Another Social Networking Site? #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “site/sight”. I was immediately reminded of the Reddit blackout. For those not on Reddit, this was started in the blindness subreddit (or so I believe) as a protest to third-party apps to access Reddit being charged enormous fees in order to use Reddit’s API. This would, or so I’m led to believe, essentially render third-party Reddit clients unable to continue as of July 1.

What does blindness or sight have to do with this? Well, the Reddit app is particularly inaccessible with VoiceOver, unlike some third-party apps. While the Reddit site is slightly more useable than its mobile app, it’s still not fully accessible. The fact that third-party apps will most likely be going out of business as of July 1, means that those without sight will no longer be able to access the Reddit app.

While R/Blind is back online, many subreddits are protesting indefinitely by having gone private and disabled posting. This gives me the idea that more is at stake than just the blind community.

I joined Reddit less than three months ago, but I’m pretty sure I’ll have to let go of yet another social networking platform. Oh wait, I can technically still use Twitter and Instagram and Facebook, the latter of which I do still use for its groups, but I prefer not to. I’m glad I still have WordPress, although I wonder for how long.

The Wednesday HodgePodge (June 14, 2023)

Posted on by Astrid

Hi everyone. It’s been a while since I last touched the blog. Honestly, I haven’t been feeling inspired. Today is no exception. I’m joining the Wednesday HodgePodge once again. Here goes.

1. What does productivity look like to you?
I honestly don’t really know. I don’t do to-do lists, but I do have goals. For example, I’d really like to blog at least three times a week.

2. What was your fondest (or one of your fondest) memory of High School?
Participating in the Model European Parliament debating contest, in which students pretend to be EU representatives. Especially because I was chosen by a student committee, not the teacher. The students were in the year above me, mind you. I don’t think my classmates would ever have picked me. Neither, it turned out, would the teacher responsible for the contest and he didn’t shy away from admitting that it was because of my blindness. That, he also admitted was the reason I didn’t make it beyond the provincial level. I don’t mind. Going to Arnhem for a week to debate the European Union’s most pressing issues (I was on the foreign affairs committee) was cool. So was partying at night and getting tipsy on two beers, the most alcohol I’ve ever had. And trying a few puffs of a joint. Which, since I didn’t smoke, did nothing. For which I’m intensely grateful, since I later found out about the mental health risks of cannabis.

3. What did you do the summer after High School?
Nothing in particular until I started at the blindness training center in late August.

4. June 14th is National Strawberry Shortcake Day…are you a fan, and if so will you celebrate? How do you make yours? Have you been strawberry picking? If so what do you do with all those berrries?
I have no idea what shortcake even tastes like, since it’s not a thing here in the Netherlands. I haven’t been strawberry picking recently either.

5. What’s something you always splurge on?
My latest crafty interest, so it’s been polymer clay for several years. I am quite embarrassed to admit that, ten years ago, during the year I started crafting, I probably spent at least €1000, if not more, on card making supplies. And this was a time when I couldn’t sensibly afford to spend €100 a month on things I didn’t need. Besides, I ended up throwing most of my supplies away after that year.

6. Insert your own random thought here.
I recently bought new AirPods. The old ones had an annoying beep in the right earbud, and since I had given up on the perfect noise canceling headphones, I decided to settle on AirPods instead. The good news is I actually figured out how to pair them with my PC.

Long-Term Care for People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter L post in the #AtoZChallenge. Today, I want to talk about long-term care as it pertains to individuals with intellectual or developmental disabilities. My post is going to be a bit centric to the Dutch situation, as that is what I know best.

In the Netherlands, people who need lifelong care fall either under the Long-Term Care Act or the Social Support Act. Criteria for the Long-Term Care Act are very strict, as it covers lifelong 24-hour care in a care facility (or in some cases at home, but I don’t know that much about that). In other words, to qualify for this type of care, you need to prove that you will never be able to live without 24-hour care. The Social Support Act covers community-based supports, but also temporary supported housing, such as independence training for young adults. (Care for under-18s is covered by the Youth Act, which is in some ways similar to the Social Support Act but covers more domains.)

The Social Support Act is implemented by the local government. This means that, if you decide to move while receiving social care, you’ll need to reapply. Since care under the Social Support Act isn’t lifelong either, you will also often need to reapply. Some cities will grant significantly disabled people funding for five years, but some won’t and this means you’ll need to have a “dinner table talk” as assessments are called, each year. On the other hand, under the Long-Term Care Act, your right to your care profile is lifelong and countrywide.

Care profiles make up the funding classification system in long-term care. These care profiles are based on one’s primary care ground and then on one’s level of care needed. There are criteria for each care ground and then criteria for each level. For instance, for intellectual disability care profiles, an IQ below 85 that was apparent before the age of 18 is required. I do for this reason obviously not qualify for an intellectual disability care profile. My care profile is based on visual impairment.

Until 2021, psychiatric disorders, and that included autism if you happened to have an IQ above 85, were exempt from qualifying an individual for the Long-Term Care Act. The reasoning was that mental illness is treatable, so individuals with psychiatric disorders cannot prove they’ll need 24-hour care for the rest of their lives.

Back to care profiles. For intellectual disability, there are I think six different profiles. Most people with profile 3 and 4 (profiles 1 and 2 no longer exist) will live in community-based supported housing. I am more familiar with people with care profile 5 and 8, which are severely intellectually disabled people who need a lot of (profile 5) or total care (profile 8). I am also familiar with profile 7, which is for individuals with an intellectual disability and significant challenging behavior. My visual impairment care profile is comparable to profile 7 in intellectual disability.

These three profiles I mentioned, are the only ones that can qualify a person for “extra care”, ie. what I usually refer to as one-on-one support. Extra care, unlike the care profile itself, is temporary and specific to the regional Care Office. For this reason, if I am to move out of the area of my Care Office, I will lose my one-on-one and my new care agency will need to reapply.

Legal jargon aside, what is it like living in long-term care? Well, most agencies for the intellectually disabled have one or more main institutions but they do aim for community-based living when possible. In fact, when integration was hyped up in the 1990s, some agencies simply demolished their institutions and started moving even the most severely disabled or behaviorally challenged individuals into the community. Back in 2006 or 2007, I criticized a documentary criticizing this move, saying it was poor care that caused deinstitutionalization to fail. However, let me just say I’ve made up my mind.

Hello Monday (March 6, 2023)

Posted on by Astrid

Hi everyone. A few weeks ago, I discovered another great weekly linky called Hello Monday, in which bloggers share about their weekend. Since I didn’t join #WeekendCoffeeShare this past Saturday, I still have a lot to share about the weekend. Besides, Sunday afternoon was fun, so even if I had posted on Saturday, I could post again today. Let’s get started.

Saturday morning was kind of hard. A new staff was being introduced to me, so for the morning shift there were two staff people doing my one-on-one. I do appreciate the fact that they actually had him properly introduced to me rather than having me do all the explaining, like they did with the student staff, but it did lead to me overhearing them converse about stuff that they said wasn’t my business. Well, if it’s none of my business then why discuss it in my room with me sitting right there in the middle?

Saturday evening was slightly better, but Sunday morning was hard again. The staff assigned to be my one-on-one that day always complains of a sore arm when holding my arm to guide me when walking, but I can’t safely walk without a sighted guide and I struggle to hold onto someone’s arm too (which is the proper way of walking sighted guide). In this sense, I empathize with this staff. Being that he isn’t the crafty type either, we were quite limited in the activities we could do, so I eventually decided we’d go for a walk anyway.

After he left at just past eleven for my “time to rest” (his cringe-worthy term for time without one-on-one support), which normally doesn’t start until 11:30, I indeed had a little lie down, but had had it by 11:30 and decided to go into the living room to see the other clients and staff. I sat there while they had lunch (and I had a little bit too). I was going to have a visit from my husband at 1PM and we usually go out for lunch then. One of the staff directed us to clear up the table, while she herself remained seated. Granted, she was another client’s one-on-one and either that client can’t or won’t clear up. I can’t without someone assisting me either and my one-on-one was nowhere to be found, but thankfully another staff helped me.

When my husband came to pick me up, he drove randomly. At one point, he asked me where we were going. “Where are we?” I asked. He replied we were at highway A50, headed northward, in the middle of nowhere. Zwolle was the closest bigger city, so we decided to head there. We went to Ikea, where we looked around a little, tthen had fries with chicken (for me) and meatballs (for him). Then we saw these really cute soft toys. My husband pointed out an orangutan, which I immediately decided to buy. My husband wants me to name him after the monkey king in The Jungle Book and he wanted me to look up the song on our way back to the institution. Not that I remember that movie. I mean, I’ve probably seen parts of it, but we only had public television at home when I was a child. I think the monkey is called Louis.