#WeekendCoffeeShare (February 24, 2024)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare again this week. It’s the last Saturday of February and I honestly can’t wait for spring. How have you been? I’ve had my last cup of coffee for the day already, but I can still offer you something to drink if you’d like. Let’s catch up.

If we were having coffee, first I’d talk about the weather, as usual. I’m really disappointed in it this week. It’s been raining a lot and it’s been quite cold. On Thursday, another storm even raged by and management decided we weren’t allowed to go outside. This was in light of the situation in which a staff member died last December from being hit by a falling tree while going out in a storm. I want sunshine, for goodness’ sake!

If we were having coffee, then I’d tell you that obviously I haven’t been all that active lately. I think I only met my movement goal on my Apple Watch three times tops this week.

I might go swimming soon though. My assigned staff told me they found a spot for me to go into the pool on Thursdays. However, I’d need a staff to actually accompany me in the water, because I won’t be able to follow instructions when shouted from the side and there will be other clients in the pool too. If there’s no staff available who’s willing to come into the water with me, he said we could do fitness instead. There’s some gym equipment on grounds here, but there won’t be an instructor there. I’m fine with this, since I know how to work most equipment or my staff will be able to figure it out.

If we were having coffee, I’d share that I did have quite a productive week in the crafty department though. I made a polymer clay unicorn (yes, another one) on Tuesday. I didn’t do it fully independently, but that’s okay. I did add wings to this one, as well as Hotfix stones below each wing.

I also made a bird’s nest out of polymer clay on Thursday. That one is still waiting for more projects to join it so that I have more things to put into the oven together.

If we were having coffee, lastly I’d tell you that my support coordinator came back to me on Monday after talking to the behavior specialist. My emotional functioning won’t be re-assessed until June at the earliest and my day schedule won’t change until after the summer at the earliest. At the end of our discussion, she gave in on the day schedule and said she’d discuss it in the team meeting. I honestly don’t really care about the day schedule as much. I mean, it’s not perfect, but no day schedule is going to be perfect. What I do care about, is to lessen the chaos of my care. I mean, I know it’s better than it used to be at the intensive support home and I probably sound like a Very Hungry Caterpillar if I request more accommodations. I said as much to my support coordinator, but she tried to validate me by saying my attitude stems from my trauma.

The fact that there’s no designated one-on-one shift, however, has a lot of drawbacks and not just the fact that I get confused about who’s going to show up each support moment. It’s frustrating also because only the staff who works until handover, writes the day’s logs and those usually aren’t the staff members supporting me. I do, for this reason, notice a lot of irrelevant logging and, last Thursday, when I had a near-perfect day, there weren’t any notes at all. I think my staff probably hate me comparing my situation to the one in Raalte, but there, my designated one-on-one had fifteen minutes at the start of their shift to read the previous days’ log notes and fifteen minutes at the end to write up theirs. This meant I didn’t have to explain everything half a dozen times, like I do now. I also feel like having a designated shift would mean I could be much more clear on what I am going to do, lessening the mere talking and increasing the actual activity. I see why, if I keep rambling to a staff member for all of my activity time slot, they won’t want to spend another time slot with me, but I don’t like to spend all of my activity time rambling about the same issues either. The only reason I do is because I can’t count on getting it across.

#WeekendCoffeeShare (February 17, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. Like most times, I’ve already had my last cup of coffee for the day. I hope we still have apple and peach-flavored Dubbelfrisss, my favorite soft drink, though. We’re permitted a soft drink each evening as opposed to just on weekends as of this week, but I haven’t had it each day and I’m pretty sure I’m the only one who drinks this particular soft drink, so I’m optimistic there’s still some left. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first, I’d talk about the weather. It’s been a rainy but mild week. In fact, on Thursday (if I’m correct), the daytime temperature climbed to 15°C. Today was the best day of the week as far as it not raining goes, but we did get a few drops here and there.

If we were having coffee, I’d share that I taught myself and subsequently my staff a new dice game called Centennial. It is a welcome distraction from the usual Yahtzee. I have also been playing Mexican, which is supposedly a drinking game but it can be fun without the beer too.

If we were having coffee, I’d tell you that, on Thursday, I finished the first pair of polymer clay earrings I can actually wear. The previous pairs of earrings I created had been hooks, which I can’t yet wear due to not having had my ears pierced long enough. I finally found an easy-to-follow YouTube tutorial on how to embed earring posts into polymer clay. Even though I could only do a small part of the work myself, I am quite satisfied with the result. And, of course, I did create the original earrings myself. These are a simple design of leaf green Fimo ovals with gold Fimo liquid around the edges for decorating. In the future, I really hope to create more earrings.

If we were having coffee, I’d share that I rewrote my care plan together with my support coordinator. I’m still unsure as to what I think of it.

Particularly, I feel rather stressed out about the portion about my emotional functioning. I had an emotional developmental assessment done in 2018, which determined I function in most areas comparable to a child age 6-18 months. In some areas, it estimated my functioning to be much higher than I would estimate my own, such as in object permanence, while in others (such as handling unfamiliar material), it estimated me to function at a much lower level. I mentioned this to my support coordinator, who proposed the assessment be repeated. Since my one-on-one is largely based on my poor emotional functioning and the discrepancy between this and my IQ, this stresses me out. This especially since my assigned staff, who will likely be asked to complete the associated questionnaire, grossly overestimates my capabilities based on my verbal skills.

On a positive note, my previously assumed exact IQ score, which dates back to a test done in 1999, was finally removed. Yay, I am no longer 154. Instead, I am said to have an “above-average IQ”, which is more in line with a more recent IQ test (also a little dated, but at least not 25 years).

If we were having coffee, lastly I’d tell you all that, next week, I’ll finally be taking my next step in tapering my antipsychotic, Abilify. I took two tiny steps back in 2022, but remained at my current dosage ever since August of 2022 due to never having stabilized in the intensive support home. Now I’m not sure it’s the right time either, but then again I doubt it’ll ever be the right time, in that I’ll probably never be fully stable. I will go from 25mg to 20mg a day. I will stay on this new dosage for at least six weeks, unless of course I’ll spiral out of control to the point of necessitating we return to the old dosage. Wish me luck!

January 2024 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of January, so I’m reflecting back on the past month. This month was rather eventful but slow-going at the same time. Christmas sounds like centuries ago. As usual, for my monthly reflections, I’m linking up with What’s Been on Your Calendar? (#WBOYC).

The month started out rather positively with me being full of energy, new hope and inspiration. Indeed, I did create some cool new polymer clay things over the past month, including a Valentine’s frog. That one now stands on a Valentine’s Day-themed (well, kind of) table in the living room of the other side of the home.

Polymer Clay Valentines Day Frog

I also crafted the cat I showed you all earlier, a penguin, a rabbit and a few things that I might be turning into earrings at some point.

Last week, I also cooked rice and chicken for myself and my fellow residents. This was great.

Early in the month, I didn’t have many visitors due to various circumstances, but thankfully I was able to see my spouse twice this month anyway. I also saw my mother-in-law twice, on the 16th because it was every-other-Tuesday (we’d skipped the 2nd because I was sick) and last Monday because I had my care plan review.

This care plan review probably warrants its own post, since it was a lot to process. Midway through the month some issues that I’ve been having with my assigned staff, that I can’t go into here, came to a point where I was greatly struggling too. This and some other things, including the fact that I frankly don’t do as well with male staff as I do with female staff, have led me to request another assigned staff. Whether this can happen, I’m not yet sure of, but I hope so. Thankfully, I do have my support coordinator, with whom I do get along.

A week and a half ago, she and I finally finished my new crisis signaling plan. This has yet to be brought under the attention of all staff and even then, staff have to be willing to follow it.

Last week, a staff not being willing to follow this plan, led to me having a massive meltdown. More specifically, I spiraled out of control because the staff assigned me a temp worker for the late shift, while that entire day there were no staff I sort of trust except for one and she, contrary to what’s in my plan, refused to come over for just five minutes. I was a horrible person to her and the other staff and there’s no justifying that, but it’s sad to realize that her coming over for just five minutes might’ve prevented an evening-long meltdown.

Over the past week, I’ve generally been struggling with all the staff changes, changes to my one-on-one for various reasons and general chaos. I feel, truthfully, like I’m swimming in the North Sea again, as I explained it at my care plan review. The way I explained it then, when I was in Raalte in late 2021, it was like swimming at the shallow end of the pool as far as support went. And, while, like every toddler that needs to learn to swim having their days when they resist the water, I had my bad days, they weren’t due to poor support. Then, the first male staff and, later, some temp workers were introduced to me and I had to endure the odd day when I didn’t get my allocated one-on-one. I struggled massively with this challenge and this was the main reason I decided to move. Then, at the intensive support home, I was thrown right into the Pacific Ocean: a day schedule that was rather stupid, constant staff changes, me always being assigned the new temp worker, etc. Now, on good days, I feel like I’m swimming in a calm lake and, on bad days, I feel like I’m swimming in the North Sea. And then there are those really good days when I feel like I’m back in the pool. Those are the days I’m supported by my “favorites”, as my assigned staff calls them. And just so you know, just because I survived my previous home, doesn’t mean I coped or can cope with the current chaos of my home. Yes, it’s better than it was, but that doesn’t mean it’s good. I try to be understanding of the fact that everyone faces staff shortages, temp workers, etc., but honestly, listening to all the “everyone has to give a little” wears me down.

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’m More Spontaneous

Posted on by Astrid

Hi everyone. I’m participating in the Writer’s Workshop today and combining two of the prompts. One is to write a post inspired by the word “spontaneous”. The other is to share something you can do now that you couldn’t do a year ago.

I haven’t necessarily learned anything huge over the past year. However, I did improve on my crafty endeavors and the main thing I learned was to be more spontaneous. A year ago, I would follow a YouTube tutorial almost exactly as it was shown. That’s not really creating, honestly; that’s copying. Now though, I create some things using just my concept of them. Like the below cat I created yesterday. It’s not terribly imaginative, I know, but it’s a start.

Polymer Clay Cat

I am also more daring to experiment and less afraid of failing. Like, with the above cat, I used Fimo liquid deco gel even though it might smudge (it didn’t). This decreased fear of failure also led to me crafting the unicorn that I made completely independently just before New Year’s. While courage isn’t necessarily a skill I acquired over the past year, since it’s not a skill at all, it’s definitely helped me improve.

In other areas of life, I am also more spontaneous and more daring than I used to be. The reason is probably in part the fact that my staff give me the necessary predictability rather than leaving me to complete and utter chaos. I’m still on the less spontaneous side of the spectrum, but that’s totally okay.

Lovin’ Lately (January 5, 2024) #FridayFavorites

Posted on by Astrid

Hi everyone. I haven’t shared the things I loved recently in a while, so I thought today it would be fun to do so. As usual, I’m linking up with Friday Favorites.

1. My new clay extruder. I got the Makin’s Professional® stainless steel one. It’s a lot sturdier than my previous extruder, which I managed to damage within weeks of getting it. I only got the new one yesterday, so am still learning to use the extruder. For this reason, I haven’t really made anything using it yet.

2. Cernit polymer clay. This is a new to me brand of polymer clay and I haven’t yet made anything out of it either, but I’m loving all the beautiful colors it comes in.

3. The book The Complete Enneagram by Beatrice Chestnut. Okay, this one I’ve had for a few weeks already, but I really like it and, since I haven’t done a list of my favorite things in a few months, I think I can still mention it. It really helps explain not just the Enneagram types, but also the instinctual variants.

4. The book Feelings First Shadow Work by Benjy Sherer. The author advertised the book in one of the personal growth groups on Facebook I belong to, saying something about what if, say, your leg hurts because of a baseball hitting it ten years ago and you kept going to the field to chase that baseball down. That, he claims, is what most people do when they start doing shadow work: focusing their minds on details of past traumas rather than truly feeling their current feelings and processing those. I cannot articulate what the author said nearly as well as he could, but his words were spot on. Another appealing factor about the book is the fact that it has journaling promts. Then came the big bummer: we’re instructed to read the entire book first before jumping to the journal prompts. Having the short attention span that I do, I’ve only just started the book, but it so far seems quite cool.

5. A huge chocolate Christmas tree. Unfortunately for you (or maybe fortunately as I’d just make your mouths water), I’ve already eaten part of it, so I cannot take a picture. I got it from a temp worker on Wednesday when we strolled down to the town’s bakery to buy some apple-filled pastries called “appelflappen” for the two of us and the thing stared at her. She said she gave it to me as I was her first client of 2024. How lovely!

What “Playtime” Means to Me #Bloganuary

Posted on by Astrid

Today’s prompt from #Bloganuary asks us about playtime. What does “playtime” mean to me? Do I play in my daily life?

Honestly, it depends on how one would define “playtime”. I, as someone who does not work, could consider my day activities “playtime”. I mean, there are individuals who do work-like day activities, but I don’t. Indeed, I’m pretty sure I consider working with polymer clay “playtime”.

For 2024, I am considering restarting some adapted version of The Artist’s Way. I mean, I cannot do Artist’s Dates completely by myself, but I can be more creative doing them than I would otherwise be. As Julia Cameron says, doing the work of the Artist’s Dates and other tasks in the book is really play, and I’m pretty sure I agree.

I also sometimes do actual things considered “playtime” by most adults, such as go on swings or roundabouts. We have adult-size playground equipment on institution grounds that I occasionally go on.

My Hopes for 2024

Posted on by Astrid

Hi everyone. As regular readers of my blog know, I don’t do New Year’s resolutions, instead calling them “hopes”. This is just an excuse not to have to take responsibility, I guess, but oh well. I love writing them and looking back at them after a year to see how well I did. Last year, I did participate in #WBOYC, of course, but honestly I never looked at my hopes for 2023 when doing my monthly reflections. Oh well, maybe my first not-quite-resolution has to be to look back at this post when reflecting on the month. Here goes.

1. Get back on track with respect to healthy’ish eating. I did manage to get to a healthy BMI in 2023. That is, I’m pretty sure with all the New Year’s treats, including more “oliebollen” than I told my dietitian I liked, I’m now back across the line to overweight (I was only half a pound below that line last week). I know that with some cutting back on snacking, and it doesn’t even have to be drastic, I can lose the excessive pounds I gained over the holidays. More importantly though, for the remainder of the year, I’d like to maintain a relatively healthy diet. After all, sugary ttreats and high-fat foods are bad for you even if you’re at a healthy BMI.

2. Get back into a regular movement routine. Though I did excellent for the first half of 2023 and pretty well for most of the second half too, like I said yesterday, I wasn’t moving as much over the past month or two as I would’ve wanted to. This year, I obviously hope to meet my movement goal each day, but I’m not sure that will be a realistic goal, as it wasn’t in 2023 and that’s not just because of lack of motivation. I’d also really like to find another way of exercising besides walking, either swimming again or something else. I seem to remember we do have gym equipment somewhere on institution grounds, so maybe that’s an option.

3. Write more regularly. Last year really sucked in the blogging department. I really hope to change that and get back on track with blogging more often.

4. Broaden my horizons in the crafty department. I hardly touched on this yesterday, but the last couple of months were really positive in this respect. For one thing, I started creating figures, such as the gnome and Santa, without consulting YouTube tutorials. For another, on Saturday, I did something really cool: I crafted a unicorn completely independently! I did initially leave black streaks on the head from touching it while trying to attach the eyes, which the staff had to clean up with alcohol. Other than that, I did everything completely without supervision or help.

In 2024, I really hope to be more creative, try out more things on my own (without the expectation that I’ll lose my one-on-one) and generally have more fun claying and maybe doing other crafty things.

5. Explore other day activities. In 2023, I wanted to expand my horizons with respect to my day schedule, moving beyond 60 minutes at a time, beyond my room and beyond one-on-one. The first was a massive success, as I now have a great day schedule (which of course took me moving out of the home I lived in last year, but oh well). The second and third, I’m not 100% sure I want to achieve, actually. Rather, I’d like to explore meaningful activities, whether these can be done in my room or elsewhere, on my own, with my one-on-one or in a group.

6. Get settled into my current care home, generally. I really hope to get more comfortable here and start building up a trust-based relationship with some staff.

7. Improve in the mental health department. This, for me, means stabilizing with respect to my trauma-related symptoms. It also means getting closer to a proper med combo and dosage. In 2023, I didn’t change any of my meds or dosages, which was frustrating as I did notice some increase in possible side effects. I’ll have a meeting with the intellectual disability physician to discuss my meds on the 15th.

8. Continue to work on my relationships and supporting the people I love. Particularly, my marriage evolved in a positive way in 2023 and I would really love to keep it as strong as it is going forward.

What are your hopes for this year?

2023: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year. I am dealing with a nasty cold and very much overloaded by the early fireworks. I really expected the institution town to be quiet, but it isn’t. Regardless, my sense of duty is stronger than my wish to crawl into bed with a PRN tranquilizer and that sense of duty tells me I need to review the past year. So here goes.

I started out 2023 cautiously optimistic. I mean, I admitted in my hopes for 2023 that my day schedule, though better than the one my then support coordinator had given me, was far from ideal. In the months that followed, it would turn out that “far from ideal” was really a euphemism and that the intensive support home wasn’t suitable for me. I know my staff there blame my critical attitude, but honestly my current day schedule is pretty much ideal and, moreover, at least my staff try to think in terms of validating my needs rather than fueling competition for care.

By late January, I had pretty much decided I didn’t feel I could live in the intensive support home long-term, but it took till mid-March for a meeting to formally make the decision to start moving plans again. Then I waited two months before hearing any steps had been taken, then another two before that awesome E-mail from my now assigned staff to my mother-in-law asking what color of paint I wanted on my wall.

In the meantime, I didn’t sit still, though sometimes it felt like it. I indeed wasn’t as active as I was during 2022. I participated in the April #AtoZChallenge on my blog, which was really my only active month this year.

I also helped set up swimming for the intensive support home. After all, the idea to ask the institution pool whether they had a time slot for me and a staff to try out swimming, came from me, and then it turned out this time slot wasn’t available just once, but each week.

For the most part though, over the spring and summer, I struggled. It didn’t help that my support staff came up with the conclusion that I got more one-on-one support than I was getting funding for. This led to regular arguments with my former staff about how to cut those hours once I moved.

When I actually moved and my hours had to be cut, the staff soon enough figured out that this wasn’t a viable situation. Thankfully, I got my hours back, first through my care agency and then through funding from the Care Office.

Once this had been sorted, my life significantly improved. For one thing, I was spending more time creating things out of polymer clay. I also explored other activities, such as baking.

In the health department, 2023 was a mixed bag. I did reach my goal of getting to a healthy BMI, but over the past couple of months I have been struggling to get in the movement needed to meet my activity goals. That is, I haven’t met my movement goals several times this past month. One reason is the weather and the fact that, now that I’m at my current care home, I cannot (yet) go swimming regularly. Another factor though may be the fact that I’ve lost weight and haven’t adjusted my movement goal accordingly. Still another factor may be laziness though.

Lastly, 2023 was the year I left Christianity for good. I mean, I’m still spiritual, but I don’t care for a God that condemns the vast majority of people to eternal suffering, many of whom simply for being themselves.

December 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. I’m early sharing my end-of-the-month reflections, because I’ll share a review of the entire year tomorrow or on Sunday and I just now felt inspired to write. As usual, I’m linking up with #WBOYC.

The month started out pretty good with my new, pretty much ideal day schedule having taken effect. I did worry slightly that it’d be taken away if I didn’t spend my every two-hour activity time slot in the afternoon actually working with polymer clay or doing some other long activity. Thankfully, so far, it’s not been changed.

Also early in the month, I started acting out a bit because I got assigned a temp worker due to a staffing rearrangement. I started constantly comparing myself to a client who doesn’t need to deal with temp workers. Finally though, I calmed down and asked my assigned staff to write in my signaling plan that staff focus on validating my feelings and needs rather than feeding my comparison trap.

In mid-December, I went on the lights tour (I called it “Christmas lights tour”, but it wasn’t actually specifically Christmassy) around town. I loved it but had to agree with the staff that going without my one-on-one wouldn’t have been an option.

Christmas itself was okay but overwhelming. My spouse and I spent Christmas day at my parents’, where my sister and her family were too. Dinner was a lot better than I expected. However, both my spouse and I were overwhelmed by my nieces and my spouse might’ve contracted whatever illness my sister was carrying (COVID, possibly).

We spent the afternoon after Christmas at my in-laws having a Christmassy lunch. I went for an hour-long walk with my mother-in-law that day.

Like I mentioned last week, the storm last week caused one of my institution staff to be hit by a falling tree. She unfortunately died. This was quite a scary experience to many people here, so I for one at least hardly went for walks all week. I finally found out how to check for weather warnings today, so was able to go on a walk (two, in fact) again. Thankfully, the areas with lots of trees now cannot be entered anyway.

I have been slightly more creative than I used to be over the past month. Stilll not as creative as I’d like to be, but I’m getting better. Projects included another polymer clay unicorn, a butterfly and a pineapple charm. Also a dolphin which hardly anyone sees as a dolphin. The worst insult it’s gotten is that it’s a mouse.

Polymer Clay Dolphin

In the health department, I did okay. I did gain 2kg over this past month, all within the last two weeks. However, I am still within the weight range I agreed upon with my dietitian and on the upper end of a healthy BMI. I did resolve to lose those 2kg eventually though, but it doesn’t have to be in two weeks.

I do have some pain in my lower abdomen. No UTI and a bladder scan was normal too. I guess that’s a positive thing.

Another positive thing, which I almost forgot to mention, is the fact that my one-on-one got renewed. Not just that, but the hours the agency had asked for, were granted. This means my care for now will definitely not be decreased, like I had feared. After all, until the renewal, the agency was paying for some hours itself and that couldn’t have lasted. Thankfully, the Care Office granted the full number of hours requested.