#WeekendCoffeeShare (December 23, 2023)

Posted on by Astrid

Hi everyone. I’m joining in with the #WeekendCoffeeShare once again. As usual, I’ve had my last cup of coffee for the day. We didn’t have chips to go with my soft drink, as for some reason the person ordering our care home groceries had ordered far too little. We are also almost out of desserts and the next delivery of groceries won’t be till this coming Wednesday. It’s going to be a not so luxurious Christmas after all. Speak of first world problems. Let’s have a drink (thankfully I have lots of green tea, including coconut-flavored green tea) and a biscuit (I have cinnamon stars and stroopwafels in my cupboard) and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s usually uneventful here in the eastern Netherlands, but not so this week. Storm Pia actually hit us hard. In fact, on Thursday, the storm caused a tree to fall over on top of a side-by-side bike here on the cycling path that’s along institution grounds. The staff member steering the bike was hit so hard that she didn’t survive. The client had relatively minor injuries, but I’m pretty sure they’re traumatized for life. I don’t know the staff member myself, thankfully, but it was a warning sign not to go outside in the storm.

We’ve been experiencing heavy rain and wind all week except for Monday. Monday was actually a beautiful day. I went for a 5K walk with a staff member that day.

If we were having coffee, next I’d tell you about the stroopwafel cheesecake I made yesterday. I made it because my one-on-one got renewed, something I really hadn’t expected. The cake was extremely sweet and a calorie bomb as they say here but who cares? It was also delicious, after all.

If we were having coffee, I’d share that I’ve really been feeling creatively motivated lately but have been struggling to put this motivation into action. As a result, I haven’t been doing much with my polymer clay lately. I’d really like to change that soon. I did order new clay, because I want to experiment with Cernit and also because some of my Fimo is too crumbly to condition without exerting enormous effort.

If we were having coffee, I’d share that I did come up with the idea of using my two-hour activity time slot for cooking a simple meal for myself and my fellow clients. We could then reheat it in the oven or microwave when it’s dinnertime.

If we were having coffee, I’d tell you my assigned staff asked me to think of goals for my upcoming care plan. He did say that these goals do not need to be all that drastic or anything and that simply having a meaningful life could be a goal in itself. I mean, my staff at the intensive support home have been pushing me to create independence-focused goals but I really don’t care for those given the discrepancy between the fact that technically my body still functions okay but due to overload tasks still cost me tons of energy. I mean what if staff and I set a goal for me to achieve a certain task and I physically achieve it in three months’ time, then staff will always expect me to do it independently because purely physically speaking I can. Then because it costs me tons of energy I’ll end up neglecting it if I don’t have supervision (ie. someone pushing me to do it) and we end up back at square one. And to be honest, I don’t want to have someone supervise my every task that I can do myself just so they can tell me to do it myself and push me far beyond my capacity limits in terms of energy.

If we were having coffee, lastly I’d tell you all that I’m looking to finally turn my room into an actual living space. I’m looking to buy some more furniture and also to possibly decorate it more. Currently, there’s a box full of junk in my room that I could really empty out. I mean, after I’ve finished my crisis signaling plan, because the folder from Raalte is in there. In its place, I’d like to put a second nightstand or small cabinet, so that I can put my claying supplies in there rather than in a box under my bed. I am also looking to put some poster on my wall, probably something not too weird. I mean, I originally wanted to go for a unicorn theme but that’d be all very flashy, which isn’t exactly my style.

Speaking of unicorns, I will be wearing a unicorn-themed Christmas hoodie this year, like last year. It’s a little on the big side now, but not too much so.

Hope you all have a lovely Christmas.

The Wednesday HodgePodge (December 20, 2023)

Posted on by Astrid

Hi everyone. Another Wednesday, yay! I’m joining in with the Wednesday HodgePodge. Here goes.

1. Did you do more talking or more listening yesterday? Was it by choice or by necessity?
Talking. Honestly, even though I’m an introvert, I talk more than I listen generally. Maybe that technically makes me an ambivert, who knows?

2. Are you a tea drinker? Hot, cold, or both? Flavored? What do you like in your tea? Do you make Christmas tea this time of year? What time of day do you like to sip your tea?
I’m more of a coffee lover but I do drink tea occasionally. Usually hot. I mostly drink plain green tea, although I like some flavored green teas too, like coconut or cranberry. Nothing in my tea please. I’ve never made Christmas teas and have no idea what makes a tea specifically a Christmas tea. I usually drink my tea in the afternoon or evening.

3. What’s an activity you won’t try, an event you won’t attend, or an athletic challenge you won’t take part in not even for “all the tea in China”?
Marathon running. That is, most likely I will never run more than 100m at all and that can barely be considered running.

4. What’s something most people seem to love but is not “your cup of tea”?
Starbucks. And yes, I thought of that before I’d read Joyce’s answer. Like I said before, I went there twice and thought I sort of liked it the first time (because everyone apparently does). The second time though, both I and my spouse decided we definitely weren’t coming back.

Oh and romance novels. I am not sure whether I haven’t found the right kind yet but I think they’re all horribly cheesy, shallow and predictable, and it’s not like I need lots of twists in a book otherwise.

5. How does your family celebrate New Year’s Eve?
Uhm, we don’t? That is, as far as I know my spouse isn’t expecting me to come to our house for the occasion. Last year, though I did spend New Year’s Eve in Lobith, we went to bed before midnight.

6. Insert your own random thought here.
I want to share some good news: my one-on-one got renewed! I don’t know any details yet, but according to my staff everything will stay the same with respect to my care.

Never a Perfect Day: Is It a Bad Attitude?

Posted on by Astrid

Yesterday, as I was paging through some collections of journaling prompts I own, I came across a prompt that said: “Today was a perfect day because…”. Now I would counter that not a single day in my life was perfect. That in turn reminded me of something my assigned staff at the intensive support home used to complain about. She’d say I never said I’d had a great day and rarely said I had a good day. Most days though, I said my day was “okay”. I’d regularly say a shift had gone “pretty well”. To that, she often asked me to clarify what didn’t go well, since I didn’t say it went well, but said “pretty well” instead. According to her, even if I’d had a perfect day care-wise – my day schedule was followed precisely and I’d gotten all familiar staff -, I’d still find something to complain about.

There are several things I could add to this. For one thing, I wasn’t the one complaining. I think “pretty well” or even “okay” isn’t negative. For another, I never had an entire day where my day schedule was followed precisely and I was only supported by familiar staff. I do have those days now.

Another thing is, I am in near-constant physical discomfort. This may be relatively mild, but it is present nonetheless. I am also perpetually in a state of overload. For this reason, merely going through the day takes me more effort than it would a non-disabled person. I realize neurotypical, non-disabled people cannot grasp what it is like to feel what I feel, but to label my lack of overt positivity as somehow being a bad attitude, is quite something different.

Sunny Sunday (December 17, 2023): A Good Day!

Posted on by Astrid

Hi everyone. Today I was writing another post, which I’ve since scheduled for tomorrow, but instead of sharing that decided to join in on Sunny Sunday. Today was a good day. Let me share what made today good.

First off, the weather. As I opened my phone this morning, I saw a weather report, which I didn’t read, but the headline said it was “ideal walking weather”. It was a little cold in the morning, but that’s only to be expected in December (I guess there’s a reason I was born in the summer, ha). However, later in the day, the sun peeked through the clouds and the daytime temperature rose to 10°C.

I decided to follow the headline’s advice and go for an hour-long walk. In the morning, I was supported by the most familiar to me staff member, which was awesome. I am so grateful she supported me rather than leaving me to be supported by the temp worker or very young and inexperienced new male staff.

In the afternoon, my spouse came by for a visit. I said that I was thinking of buying another case for my phone, since the one I’d gotten was too rigid. I am grateful to share my spouse showed me how to properly fold the back of the case.

In the evening, I had lots of fun crafting with clay. I created a butterfly pendant.

Overall, today was a pretty joy-filled day. It was also a productive day. After all, I had a shower in the morning and washed my hair, rearranged my Day One journals’ content, and have been spending the evening online reading and writing blog posts.

I of course could think of reasons why today wasn’t perfect, but no-one needs a perfect day. All we need is a little joy and sunshine in our life.

#WeekendCoffeeShare (December 16, 2023)

Posted on by Astrid

Hi everyone. It’s been a while since I last joined in with Natalie’s #WeekendCoffeeShare, so here goes. I already had my last coffee for the day and had my weekend soft drink (yay, we still got Dubbelfrisss!) too. I bet you could still get a cup of tea though. That is, I’ve had some later in the evening here. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that I bought a new iPhone last week. I bought the SE 3rd gen. I had originally intended on buying the 15, but that costs like €1000 and I would probably get annoyed with the lack of touchID and a home button. Besides, it’d be a greater risk of being stolen. Still, to be honest, I am slightly disappointed with the battery life of the one I got and had wanted the 15 for its great camera features. Of course, I myself can’t take good pictures at all, but I would’ve loved to have a device that can make them. All that being said, I’m pretty sure the pros of the one I got outweigh the cons.

My spouse bought me a lilac case for it. It’s a little on the thick and rigid side, honestly, so I might want to replace it eventually. I still have my old phone’s case, which the new one fits into too, but I don’t feel like I could in my right mind switch them up. That would be unfair to my spouse.

If we were having coffee, I’d ttell you that I joined the Christmas lights tour in my town yesterday. Originally, the staff hadn’t thought of inviting me and, since it wouldn’t end till 8PM and my one-on-one leaves at 7:30, they were saying I could walk an alternative route with my one-on-one. I was disappointed and tried to say I could walk independently alongside the others just fine and didn’t need my one-on-one. The way I had imagined it the staff would be pushing a wheelchair that I’d hold onto too. As it turned out, the wheelchair users were pushed by volunteers and one staff would need to watch the entire group of ambulatory clients, including me, if I didn’t get my one-on-one. Thankfully though, my assigned staff, who did my one-on-one till 7:30, offered to stay half an hour longer to be able to allow me to participate too. Normally, I’d have to pay like €30 for those 30 minutes of extra one-on-one – not that staff actually earn €60/hour, so don’t ask me why -, but he said he’d find another way.

Along the tour, there were various points where people had decorated their houses or front yards with Christmas lights and some had left Christmas lights along the pavement. We also came by my former support coordinator’s house. You know, the one from the intensive support home, the woman one who was my original support coordinator there. She no longer works for my care agency. Anyway, we were actually instructed to come into her garden, where she was toasting marshmallows and handing out hot cocoa. I initially didn’t recognize her even though I knew she lives in this town and the instructions mentioned her first name. She said, “think [intensive support home],” and then I realized who she was. She asked me how I was doing at my current home (she knew where I’d moved). I said very cheerily that I was doing well and liked it here. I also told her that I found out about the move through my current assigned staff E-mailing my mother-in-law wanting to know my preference for the paint on my wall. “Oh, that wasn’t fun,” she said. “In fact, that was fun,” I replied.

At the end of the tour, we got fries. That was so cool!

If we were having coffee, lastly I’d report that I finally disclosed about my possible dissociative symptoms to one of my staff yesterday. She said she’d seen some of my alters, contrary to what my assigned staff says. Maybe what he’s looking for is me calling myself by different names, which I don’t do unless I really trust someone. I’m trying to maintain the status quo as to whether I/we actually have DID or not, in the sense that it’d be much easier for treatment purposes if we didn’t but then again the parts, whatever you’d call them, are there whether I want it or not.

The Wednesday HodgePodge (December 13, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday, so time for the Wednesday HodgePodge. I’m so happy Joyce, being a Christian, did her best to be inclusive by not mentioning “Christmas” specifically where it wasn’t necessary and instead writing “the holidays”. Thanks for being mindful of those subscribing to other faiths or spiritual paths or none at all! Here goes.

1. Oxford’s Word of the Year for 2023 is “rizz”. Hmmm…before today had you ever heard the word? Do you know what it means? (Apparently it’s short for charisma) Have you ever used the word? If you were in charge of the world, what word would you declare word of the year for 2023?
Never heard of it nor used it. No, I had no idea what it means. If I were in charge of the world, wouldn’t I have better things to do than decide on a word for 2023? I have no idea what word I’d declare a universal word of the year.

2. What’s one word you tend to abbreviate in your writing or speech? (as in rizz for charisma)
I can’t think of any off the top of my head. I remember in high school we abbreviated a lot. “Philo” for philosophy class, for example. My spouse said it’s a grammar school thing. I remember the Center for Consultation and Expertise consultant writing a report on me in 2018 abbreviating the Dutch word for grammar school, which is “Gymnasium” (and no, it has nothing to do with sports) to “Gym” too. This may not sound as unusual to American readers, who abbreviate their version of gymnasium all the time, but it’s a real grammar school thing to say “I went to Gym” to say your secondary school was a grammar school.

3. Are you a Hallmark movie watcher this time of year? What’s your favorite character from a holiday-themed movie, book, or TV special?
I answered this question last year too I think, to the effect that I’ve never seen any Hallmark movies. Nor have I read many Christmassy or winter-themed books. I’d say my favorite characters are Aisha and Emily from the chapter book Snowstar and the Big Freeze by Daisy Meadows (and all of that series).

4. Something you look forward to eating this month?
Cinnamon stars, of course! I always talk about those. They are a type of holiday-themed cookie by a Dutch brand called Bolletje. They come in chocolate tree and coconut bell (or vice versa) varieties too. Two years ago, I got four packages of cinnamon stars from my day activities staff in Raalte and had to share the last package before it expired in late February.

5. What’s the most stressful part of the holiday season for you?
This year, visiting my parents on the 25th. It’ll be the first time in five years that we’ll be visiting them and the first time in as many years that we’ll be together as a family (including my sister). Of course, my brother-in-law and two nieces will come too.

6. Insert your own random thought here.
I updated to iOS 17.2 last Monday, which introduces the Journal app to the iPhone. So far, the only thing I sort of like is the Suggestions thing, which Day One, my usual journal app, has made use of too, since it’s an API. I still think it needs improving on though.

Crafting Lately: Polymer Clay Santa

Posted on by Astrid

Hi everyone. I have been quite crafty lately, but haven’t finished anything yet. The reason is the fact that my latest polymer clay unicorn broke because the oven was set to too cold a temperature. As a result, my latest craft project is still the Santa I created for a staff’s granddaughter two weeks ago. Today, I want to show it to you all and tell you how I made it.

Polymer Clay Santa

First, I created the body. I used Fimo in the primary color red for this. I usually use this color only for mixing other colors but I figured I had enough of it to be using some for the Santa’s body. I also sculpted the hat and arms while I had the red Fimo in my hands anyway, since I usually have one color clay on my work surface at a time. The reason is the fact that I am blind and would mix up the colors otherwise.

Then I sculpted the head out of light flesh-colored Fimo. I also sculpted ears, a nose and hands. The ears are barely visible under the hat.

I used white Premo for the beard, the rim of the hat and the ball on the hat.

Black was the hardest color to work with. I needed it for the belt, the buttons on the body and the eyes, as well as the shoes, but it can easily leave streaks on other colors of clay. I used Fimo’s black, as I don’t have Premo’s. I had my staff wrap the belt around the body and trim off the ends, as I was too scared I’d leave streaks the way I would need to feel to work with it.

Shortly after I’d finished this project, there was a topic in the Dutch polymer clay Facebook group asking us to snap a picture of our latest project or work in progress. I decided to take on the challenge and snap a picture of this Santa all by myself. I was going to show the picture here too, but unfortunately I deleted it.

A few days ago, the staff I had started this project with showed up in my room with her granddaughter. The granddaughter wanted to personally thank me for the handmade birthday gift I’d created for her. I was so touched!

It’s Not About Them #SoCS

Posted on by Astrid

Lately, I’ve fallen back into the habit of comparing the care I get or don’t get to that which another client gets. I did it with the full-time one-on-one client at my previous home too and it got so far that I ended up calling her derogatory names for getting what I felt I needed. Which, for clarity’s sake, wasn’t full-time one-on-one, but to have staff not leave me during my assigned one-on-one hours for every little thing. And more importantly, I felt it was unfair that she was assigned familiar staff 100% of the time while I got stuck with the temp workers most of the time.

This same issue is what’s at stake again now, since there’s another one-on-one (not sure it’s full-time) client here who doesn’t need to deal with temp workers. I didn’t mind this at all until one day earlier this week, the staff schedule got turned upside down to accommodate him and as a result I got stuck with a temp worker who was here for the first time.

This illustrates my point: I don’t care what others get. It’s not about them, it’s about me.

To solve my unfairly comparing myself to others and falling into an endless trap of what others have or do to “deserve” the care I feel I need, I am going to ask my assigned staff to write up a note saying that staff not engage in arguments about other clients’ care. For clarity’s sake, this is not the same as saying “No arguing, I’m leaving”, like the staff were originally told to do at the slightest opposition from me regardless of topic. Rather, I’d like the staff to listen to me and validate my feelings regarding my unmet needs. After all, to me, it doesn’t matter what someone else gets or doesn’t get, but when my care is compromised, I feel bad.

This post was written for today’s Stream of Consciousness Saturday, for which the prompt is “to me”. I realize I didn’t make the phrase central to my piece, but this was what popped into my mind.

Poem: Light and Dark

Posted on by Astrid

Light
Feels good
Like the sun
On my skin
On a warm day in May

Dark
Feels bad
Like a rainstorm
Soaking me
In the midst of November

Light
And dark
Seem to contrast
Like one is always negative
And the other always positive

But without last November
May will never come
And so it is
With light
And dark

Feel all the feels
And remember
You’re alive
And so it is…

This poem was written for this week’s dVerse Poetics. The prompt was to use a piece of instrumental music as inspiration for a poem. I have a lot of playlists of instrumental music in my Spotify library, but choosing a piece was harder than I thought. I eventually went with a piece for which both the title and the music spoke to me. This seems to be intended for meditation and relaxation practices.

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.