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.

Behind My Anger #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Many people think I’m angry a lot. It was written in my reports from psychologists as early as age 8 and maybe even younger. I do sound angry sometimes, but behind that anger are many other emotions. I mean, I rarely feel genuinely angry, but I express many strong emotions as rage, irritability or other forms of anger.

I don’t blame other people for not seeing it. I see anger a lot when others claim there isn’t any. But it’s hard for me to look beyond (my perceptions of) people’s surface expressions. When it feels as though an angry person stands in front of me, or worse yet, behind me, I shrink inwardly, but react outwardly. This is really hard for others to comprehend, but I have the same feelings as everybody else. So do you, even if it appears I only see anger. We all need to look beyond what seems to be in front of us.

This post was written for Stream of Consciousness Saturday, for which the prompt today is “in front” and/or “behind”. Linda’s also doing #JusJoJan again, which stands for Just Jot It! January. I will write a post when the prompt appeals to me, but I do really hope to be blogging regularly this month (and the rest of 2025).

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”.

To Freewrite vs. Free to Write #JusJoJan

Posted on by Astrid

I started and restarted this post several times. I really want to broaden my horizons in the writing department. To write more, but also to write more outside of my comfort zone. In a way, I want to experience the freedom I experienced when crafting my independently-created unicorn in the writing process too.

But, as with my crafting, in the writing department, fear is holding me back. Specifically, the fear of failure. The fear of my posts not being read, not being appreciated, getting zero likes or comments. If I don’t get any engagement, why bother blogging, after all? I could just as easily keep a private journal in Day One.

Then again, even in Day One, I censor myself when writing. Even where no-one reads my writings except for possibly my future self, I’m constantly telling myself I’m a bad writer, constantly editing out mistakes or “inappropriate” wording. Yes, I even did this with my Morning Pages back when I did those several times over the past couple of years.

Is it, however, really that I’m looking to freewrite? Or is it more that I want to be free to write? What’s the difference? Well, this is a freewrite.

However, there are other ways in which I let my censor, as Julia Cameron calls it, dictate what I can and can’t write. So many in fact that I hardly write self-growth posts anymore because these don’t get much engagement, even though these are the posts I sometimes feel inspired to write. When I am free to write, I write what I feel inspired to write even when this isn’t a huge success by externally-determined standards like my stats. And who knows, maybe it will be a success someday.

This post was written for today’s #JusJoJan prompt, which is “writing”.

Ideal Isn’t Real

Posted on by Astrid

Today is the day the word I picked for #JusJoJan was assigned to, so I’m pretty much obliged to write a post. My original choice for a word was “Home”, but I made up my mind as I wrote my comment on Linda’s post and chose “Ideal”. My plan was to then write about my ideal care situation.

I am not sure I can do it though. An ideal situation, after all, doesn’t exist and chasing it may mean I lose sight of the things I could appreciate in what I already have. That’s possibly what happened with the move to my current care home, much as I struggle to admit it.

Of course, I knew there were going to be drawbacks to this care home, but I minimized them in my mind. When, back in like late 2021, I read up the information on this care home on my agency’s website, it sounded ideal. In fact, I remember at one point telling my staff and some people on an E-mail support group I belong to that it was my dream care home. But that’s judging from a promotional webpage, not reality.

Then when I actually got the opportunity to go here, what I found out on my visits here indeed revealed some more negatives. However, for the most part, these were vague “gut feeling” negatives, not facts. A factual negative was the fact that staff here don’t tell us clients who will be on shift the next day, reasoning that they might fall ill. “But we all come back,” the support coordinator reassured me, “and if we don’t, we’ll tell you.” Well, the one time a staff left so far, I didn’t find out in advance.

Maybe, looking back, there were clearer signs than just my gut feeling that the dream care home was going to turn into a nightmare. I am not sure. Maybe I didn’t ask the right questions. Maybe the staff – purposefully or not – avoided answering the real questions, focusing instead on details. Either way, I can’t help it now. What I can do is never believe something is going to be ideal again. Ideal isn’t real, after all.

Solo: Making the Most of My Alone Time

Posted on by Astrid

Today’s prompt for #JusJoJan is “solo”. It has many meanings, but the overarching one is “alone”. For this reason, I thought I’d use this as an opportunity to write about ways to make the most out of my alone time.

You see, I don’t really do well with alone time. It makes me anxious. At the same time, I need alone time. It helps me recharge. How can these two coexist, you might wonder. Honestly, I’m not quite sure.

However, the more important question is, how can I make sure the recharging effect gets the upper hand rather than my anxiety? The key to this is making the most out of my time alone.

In my old day schedule, I had random slots of alone time that could last anywhere between 15 and 60 minutes, sometimes longer if I didn’t come out of my room to alert the staff. This caused intense anxiety, because I never knew when I’d have time alone and, when I did, how long it’d last. This meant I didn’t know what activities to do during my alone time.

Now though, I usually have time slots of 30 to occasionally 45 minutes alone. In all honesty, I think the 30-minute time slots could be lengthened to 45 minutes if they could be decreased in number and by extension my time slots of activity lengthened too. This isn’t likely possible at my current care home though.

During the time of my old day schedule, I used to feel stressed when alone and as a result use up the time by wandering around my apartment. Now I occasionally still do this, but I try to put each moment of alone time to good use. For example, Bible study and blogging are things I can’t do when a staff person is in the room. I do these when I have alone time, but sometimes I struggle to finish them off during my 30-minute solo time slots. At the same time, I struggle to find meaningful activities that I can do within my 60-minute time slots (which are usually cut short) of one-to-one support. Part of the reason is my need to get into a routine – for example, of gathering my polymer clay supplies. Part of it is the fact that some staff start out by proposing a certain activity, which makes it hard for me to switch to wanting something else. And part of it is probably my mindset too, in that I get overwhelmed with not knowing how long an activity will take and thinking I “only” have this amount of time. This applies to alone time too.

I often say that, in an ideal world, I’d have one-on-one all the time. This isn’t true. In an ideal world, I’d have good chunks of alone time with staff only popping in once every 45 minutes (because otherwise I’d lose track of time), so essentially no extra care then, during later evenings and part of the weekend. I’d also have good chunks of supported activity during the day. Oh wait, that’s pretty much how I had it in Raalte and I was going to let go of comparisons with old homes. No, wait again, my day schedule back there wasn’t ideal either. But it allowed for longer chunks of activity time during weekdays and that’s really what I dream of.

God Created the Stars

Posted on by Astrid

Yesterday, I started for maybe the fifth or so time in a Bible-in-a-year plan. However, this time, unlike any of the other times, I didn’t just try to read the Bible cover to cover. In fact, I’m not reading it cover to cover at all. Yesterday’s assigned chapters included Psalm 1, Matthew 1 and of course Genesis 1. The plan also included commentary in the form of a devotional. The verse I want to talk about now is in Genesis 1.

“God made two great lights—the greater light to govern the day and the lesser light to govern the night. He also made the stars.” (Genesis 1:16 NIV)

The part the plan writer highlighted, was the last bit about the stars. He commented that there are literally billions of stars in our galaxy alone. I had no idea! However, isn’t this fascinating?

Whether the Biblical account of creation is literally correct, is beside the point. It isn’t about when or how. It is about who and why. And the “who” in the Bible is God.

I think it’s quite amazing that God created an entire universe, complete with constellations and constellations of stars, and put humanity at the center of it. He could just as easily have chosen anything else. Maybe if He’d chosen another living creature, it wouldn’t have ruined the planet and beyond as much as we do.

But God has His reasons for having chosen us. And having allowed us to mess up. I’m not yet sure what they are. Maybe I’ll never find out. It’s a fact of life though that we – all of us – mess up. That’s why we need Jesus.

And maybe God’s reason for having put us at the center of the universe and yet having allowed us to mess up massively, isn’t about us at all. We tend to make everything about us, after all, both individually and as a species.

Maybe by Godly standards, we aren’t as important as we think. In fact, I’m pretty sure that most of us overestimate our importance and underestimate our shortcomings precisely because we measure ourselves by human standards. At least I do. And yet by Godly standards, only one human (Jesus) met the bar. My defiant side says this isn’t fair. Yet it only isn’t fair if we put ourselves at the center of the universe. If we put Jesus at the center, it is most definitely fair.

I am joining in with #JusJoJan, for which the prompt today is “constellation”.

I’m also linking up with Inspire Me Monday.

My Hopes for 2023

Posted on by Astrid

Hi everyone and a happy 2023 to you all! Regular readers of my blog know that I don’t do resolutions or new year’s goals. Instead, I call them hopes. Whether that isn’t just the exact same but worded slightly euphemistically, is up for debate. However, I found that, many years ago, when I did lists of resolutions, they didn’t work out. Now that I call them “hopes”, I usually probably subconsciously stick to them more. I say this every year as an introduction to my hopes.

This year, I haven’t actually thought of many hopes I have. That is, I do hope to achieve many things, but secretly I do think my “hopes” do need to be somewhat realistic in order to make it onto my new year’s list. Doesn’t that make them just like goals? Oh well, I guess so. With no further ado, I’m just going to write down the things I hope to achieve in 2023.

1. Get to a healthy weight. I never dreamt of writing this when I started my healthier eating journey at the beginning of 2022, but I lost over 10kg in 2022 and I’m only 3kg above a healthy BMI now.

2. Keep up my movement routine. I have my movement goal on my Apple Watch set pretty low at 300 active calories a day. I’d really like to surpass it regularly.

I would also like to improve on the parameters of my physical fitness level, such as my heart rate variability. These are all really low right now.

I am hoping to start actually exercising in other ways besides walking. I’d love to start swimming here on institution grounds.

3. Get to a more stable place mentally. In 2022, I hoped to remain stable mental health-wise, which got ruined by my choice to move and its consequences. Now, I’m hoping to get back to a place of relative calm again.

4. Further lower my antipsychotic dosage. I really hope the move to my current care home doesn’t mean I’m on 25mg of aripiprazole forever.

5. Get to a meaningful day structure and day activities. Okay, I have the new day schedule, which is better than the one my support coordinator gave me, but it’s not what I’d hoped for when I came here. I am really hoping to explore day activities beyond my room, beyond 60 minutes at a time and beyond one-on-one.

6. Write regularly. This is another thing I was pretty awesome at in 2021, hoped to maintain in 2022 and lost track of due to the move. I even only wrote five blog posts during the month of November. I am really hoping to get back into the writing groove this year.

7. Further explore my creative side. I’d really like to find ways to do part of my polymer clay work independently, so that I can actually do more complicated things with my 60-minute time slots of supported activity.

8. Socialize more. This was one of the main reasons for the move, at least according to the behavior specialists involved. Indeed, it is a positive aspect of my current home that wasn’t there at my old home. I honestly don’t know whether I can socialize much with the people at my home, but I can at least try and, if that doesn’t work out, there are almost 400 other residents here at the main institution. I’d really love to talk to some of them more.

I’d also love to connect to my peers in the cerebral palsy community more. I’ll hopefully attend the countrywide cerebral palsy day again in April and also hopefully join the online meetings more often. I’m also hoping to get in touch with the Eye Association more. I know this was something I hoped to achieve in 2022 but didn’t.

9. Get serious about the basics of my faith. I had a discussion about faith with my husband yesterday and the bottom line was that I tried to run without having learned to crawl, so to speak, because I was watching John MacArthur videos, which are deeply theological, even though I’m really still a new believer. I mean, okay, I’ve been a Jesus follower for two years, but I’m still struggling with the basic concepts of the Christian faith. That’s probably why I call myself a “progressive Jesus follower” rather than unapologetically claiming my identity as a Christian. I really hope to move closer on my journey towards God in 2023.

I am linking this post up with today’s #JusJoJan post, for which the optional prompt word is “resolution”. I am thinking of writing another post about resolutions in a different sense, namely the Model European Parliament debating contest I participated in during high school. However, it’s past 9PM so I don’t think I’ll have the time or energy for another blog post.

Crafting Unicorns!

Posted on by Astrid

Hi everyone. I came up with today’s prompt for #JusJoJan and it’s “Unicorn”.

I love love love unicorns! I have two unicorn soft toys. One, I got when I left the first day center with my current care agency back in early August of 2018. The other, I got in my Christmas hamper at the next day center that year.

Other than soft toys, I also have a number of unicorns I crafted out of polymer clay. Today, I am going to show you a few of my recent creations.

First up is a white unicorn charm. It is mostly two-dimensional, which I don’t really like, because it means its horn sticks out up rather than forward. It has a rose on top of its head. That one took me about half an hour to craft, because my Fimo Soft polymer clay was just a little too soft for my liking. For the rose, I used the color Cherry Red and I used Tropical Green for the leaves. The horn is done using Metallic Gold Fimo Effect.

The next unicorn I’m going to show you is my favorite so far. It was done using Pastel Lilac Fimo Effect. I did the mane and tail in Metallic Gold and Metallic Silver and used Metallic Gold for its horn. I added some purple glitters to its legs and ears for some extra sparkle.

Then last Thursday, I tried to create the perfect unicorn. I originally wanted to create the same unicorn as above but put it onto a green, flower-shaped slab. Eventually, I ended up choosing a different color, Fimo Soft Lavender, for this unicorn’s body. I did create the mane and tail using Metallic Silver and Metallic Gold again. Again, I added glitters, gold this time, though just to its legs.

Unfortunately, I forgot to blend the unicorn’s horn into the head and/or secure it with liquid clay. Rather, I secured it using wire only. This means the horn is a bit loose, which I’m told isn’t really visible but it does bother me. This is the reason I don’t think this is my best unicorn so far.

What do you think of these? Do you like unicorns?

Generosity

Posted on by Astrid

Today’s prompt for #JusJoJan is “Generosity”. I don’t tend to think of myself as a particularly generous person. That would not only be arrogant, but it would be incorrect as well. Particularly as a child, I liked receiving more than I liked giving. I was a very jealous child, often envying my sister for what she got and I didn’t.

I remember one day, when my sister and her friends had been participating in the four-day walking event in my city. It was the last day of the event and I was allowed to walk with them for this occasion. At the finish line, a parent of one of my sister’s friends had lots of candy for my sister and her friends, but he had none for me. I had a full-on tantrum in the car home even though my sister and her friends ended up giving me more candy than they kept for themselves. It caused the oldest friend, a girl my age, to cry. I was ten at the time, so far too old for toddler tantrums like this. I feel intense shame about this incident as I look back, seeing that I should have known it wasn’t fair of me to expect candy since I hadn’t walked the entire event. Much less should I have tantrummed about it in the car.

Now that I’m an adult, I am a little less worried about material goods and a lot less jealous of others, but it still doesn’t come natural to me to give material things away. Thankfully, generosity comes in different ways and I do love expressing it in other ways. I love to create my own gifts for people. Yes, of course they are material too, but that feels different.

Still, I am often reminded of the Sesame Street episode in which Bert and Ernie have a cake and Ernie gives Bert the smaller slice. Bert teaches him that he’s supposed to offer Bert the larger slice first. Then Ernie asks: “So what would you do if you were to offer me the cake?” Then he replied he’d take the smaller slice and offer Ernie the larger slice. “But you have the smaller slice now, like you wanted!” Ernie objects. This is child logic and it is incorrect. It is not how we’re supposed to be generous. We are supposed to love others like ourselves. Others before ourselves, even.

I pray God leads me to a life of greater generosity. I know I am supposed to love others as myself and that includes giving generously of myself to others. Like I said yesterday, when I trust that God will provide for my needs, He will. As a follower of Christ, I have no need to worry. In the end, everything will work out okay.