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.

Ways In Which I Was Not a Typical Teenager

Posted on by Astrid

Hi everyone. Today’s Word of the Day Challenge is “Teenager”. This reminded me of a question a fellow blogger, I think it was Emilia from My Inner MishMash, once asked: in what ways we were not like a typical teenager.

This post could have been a lot shorter had I had to answer in which ways I was like a typical teenager. After all, I wasn’t like a typical teenager in any way. That doesn’t mean I didn’t try. Like, I pretended to be a Backstreet Boys fan even though I knew next to nothing about them and had hardly heard their music. I also pretended to have crushes on boys (and girls) even though I hardly knew them and quite frankly didn’t understand attraction.

I tried going to school proms the first few times in high school, but didn’t fit in at all. I also tried wearing what other girls my age wore. My mother asked my younger sister for advice when clothes shopping for me. However, somehow I always missed the mark. I couldn’t wear makeup nor was I interested in it.

With respect to interests, I have no idea what teenagers in the early 2000s were into. I did read what I assume was somewhat popular Dutch YA fiction, but had no friends so couldn’t discuss it with them.

With respect to socially appropriate behaviors, I was way off. Still am. I didn’t know how to take care of my personal hygiene, for example. I remember my sister gave me a deodorant as a birthday present when I turned fourteen, but I didn’t get the hint. Months later, when my teacher reminded me about hygiene because my classmates had been complaining, I still had no clue what an appropriate bathing and personal hygiene routine was.

Back in the day, most teenagers drank alcohol. I tried wine at home when I was fifteen (the legal age for alcohol consumption was sixteen at the time). When I was sixteen, I went out to a pub with a few classmates. I had two beers, the most alcohol I’ve ever had in a single sitting. Later that evening, a guy we were with from another school offered me and another girl in my class some pot, which we accepted. Since I hadn’t smoked beyond a whiff here and there, I probably didn’t inhale anything, as the stuff didn’t have any effect on me whatsoever.

Where it comes to Internet and social media usage, I was probably a rather naive teenager. I wrote posts like this one about my current rather than past life in my public online diary using my full name (I do think it’s still on this blog somewhere too). Not only did I not take my own privacy seriously, but I used teachers’ and other people’s full names when writing about them too. I’m so happy none have ever made a serious problem out of it and I also haven’t been the victim of online predators. That being said, I wasn’t one to make obscene comments, like some other people my age did back in the day using their full name. I would also panic when I accidentally clicked on something that might be unsuitable for minors.

In summary, in many ways, I was like a child in a teenage body. I still often feel like a child in an adult body, truthfully.

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”.

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.

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.

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.

November 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the end of November, so I am joining #WBOYC and reflecting on the past month. Can you believe we’re almost in 2024? Ten more years and everything will be okay, as I always say (or WWIII will be started, as the book I used for inspiration for that claim says). Anyway, let’s wrap up November.

It started with the meeting on how I’ve been adjusting to my current care home on November 6. This meeting went okay. At first, I was a bit disappointed in my assigned staff’s attitude. I honestly still am to an extent. However, I’m trying to believe the staff are doing their best to help me.

The new application for one-on-one support was sent out the following week. I only heard some superficial bits and pieces of what went onto it, so I’m still very much stressed out about the possible outcome. It doesn’t help that my now old day schedule was used as a reference to base my necessary hours upon, which I’m pretty sure the Care Office are going to be very critical of, as was I.

Thankfully, at least for another 31 days, I’ll now have my revised day schedule. It started on Monday and I’m thrilled about it. Please, all pray or send out positive vibes or whatever you do for the necessary one-on-one to be approved for next year too.

I also worked on my crisis signaling plan with my assigned staff. This led to a major surprise, and not a good one: it turned out my original support coordinator from the intensive support home had significantly changed my plan without my knowledge or consent. I knew right as my assigned staff read me what staff are supposed to do when I’m asleep (the first phase talked about in the plan) during the day, ie. let me sleep and wait for me to leave my room rather than check on me periodically. Since my former support coordinator hadn’t altered the date and names of the people writing the plan, it still looked as though my staff from the care home in Raalte had written it though. I however was adamant that this was not the plan I’d agreed upon.

My assigned staff initially tried to dissuade me from focusing on this and seemed to disbelieve me, until I went and fetched the manila folder I had with my old day schedule and, yep, my old plan from Raalte. He tried to tell me they looked similar, but this was only when referring to the signs of the different phases, not the staff’s expected actions.

Unfortunately, my old support coordinator no longer works for this care agency, or I’d have filed a complaint against her. Oh well, my current assigned staff erased the evidence by editing the name and date to his and November 2023 and saving the document, after we’d indeed worked some on it. I am honestly extremely mistrusting of everyone here now that I know of this. I mean, all staff say that this home isn’t the intensive support home, but how do I know it’s different?

In the creative department, I haven’t really been as active as I’d have liked, but I did okay. I crafted a gnome out of polymer clay and most recently a Santa, both without the use of a tutorial. I also wrote some creative pieces, which I intend to do more of in December and in the new year.

Health-wise, I wasn’t as good to myself as I could’ve been. I really snacked far too much. The thing is, I still didn’t gain any weight, and am currently at the lowest point I agreed upon with my dietitian, weighing 56kg. It wasn’t that I over-exercised either, as I didn’t meet my movement goal on my Apple Watch several times this past month (and my movement goal is only 300 active calories, so you know).

I finally did get my support coordinator’s attention re the possibility that I might be experiencing cognitive decline. She’s going to ask the behavior specialist for some screening instruments for self-help skills or whatever. Sadly, these haven’t been administered to me before, so this is going to be my baseline really.

October 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means I’m reflecting on the past month’s happenings. As usual, I’m joining in with What’s Been On Your Calendar? (#WBOYC).

First, I’m finally going to share the polymer clay unicorn I crafted on September 30. Okay, that’s not technically the past month, but I didn’t fully finish it and take a picture till October 5.

My spouse joked that, judging by its colors – fuchsia, yellow and blue (the blue is called Peppermint, don’t ask me why) -, it’s typical of a specific music scene from the nineties. The staff who helped me craft this unicorn, is only slightly older than me, so she understood.

I haven’t really been crafting with clay much over the month of October. I did though help cook dinner twice. I also made a few smoothies.

I also did a good amount of walking, although I didn’t meet my movement goal every single day this month. I blame the rain, because the one day I didn’t meet the goal, it was raining almost constantly. Besides walking, I went swimming once.

My mother-in-law visited me three times this month and my spouse came by each week. My sister had originally wanted to come by this Sunday, but I prefer not to see her or my parents in the institution. Instead, my spouse and I are going to see them and my parents at Christmas.

Mental health-wise, the month has been quite good, truthfully. I mean, I’m still adjusting to my new care home and it’s October, which is a hard month for me each year. Taking this into consideration, however, I can’t complain. I am intensely grateful for the fact that most staff go out of their way to accommodate me. Initially, I was told by some that I’d be assigned the temp worker almost by default, which set me off because that was exactly what happened at my old care home and, given my attachment issues, I struggle with this. I spiraled into a bad crisis for this reason last week. Thankfully though, the staff now try their best to assign at least a somewhat familiar staff to me if they have to be a temp worker after all.

With respect to my physical health, I am happy to report I didn’t lose any more weight. In fact, I gained a few pounds. It wasn’t like I definitely couldn’t lose any more weight for my health, but I would’ve felt concerned had I lost more weight, given how much I ate over the past month. I am now within the weight range I agreed upon with my dietitian rather than slightly below it, so I’ve decided I can no longer afford as many treats as I used to consume. Yesterday, I convinced my assigned staff to add my food plan to the manila folder of important information that’s on my table in my room. After all, staff would often hand me a cookie (or two) without even thinking about it with each coffee break, despite the fact that my food plan has one only with my evening coffee break. I am due for weigh-in tomorrow morning again. Fingers crossed I won’t have gained significantly.

Hometowns

Posted on by Astrid

Today’s topic for Tell Us About… is “hometowns”. I remember having to choose my hometown on Facebook and apparently it’s the city I was born in. That would be Rotterdam. I only lived there for nine years before moving to Apeldoorn for my mother’s work. Honestly, if I had to choose a town I’d consider “home” it’d be that, even though I don’t care for the rather narrow-minded people who live here. I guess the Apeldoorn area is only “home” to me because I’ve lived here the longest and I’d probably have felt much happier had I stayed in Rotterdam for life. No-one can be sure though.

When I lived in Apeldoorn between 1996 and 2007, I lived in two different neighborhoods. The one I lived in with my parents was a kid-friendly neighborhood built in the 1970s. One of my father’s acquaintances called it an unrban planning train wreck, because the streets were so disorganized you’d get lost even when you knew your way around.

The training home neighborhood was built in the late 1990s to early 2000s. My street was called Boomgaard, which translates to “Orchard” in English. Yes, all streets in that neighborhood had weird names like “Silent Garden”, “Banister”, etc. Then again, the street names in my childhood neighborhood in Apeldoorn were almost equally weird.

As a child and teen, I often went shopping in downtown Apeldoorn with my Mom and sister. I can’t say I enjoyed it (except for going to McDonald’s at the end), but it was manageable.

Since my parents also moved out of Apeldoorn, I didn’t revisit the city after moving to Nijmegen in 2007 until I moved back to the area when moving into the institution last year. One thing I noticed, and it’s only recently dawned upon me how bad it is, is how many brick-and-mortar stores have closed. A telling example is my mentioning to my spouse recently that The Body Shop has a store in Apeldoorn that we might be able to check out. To be sure, I did a store search on the website and guess what? It’s gone! I could really have known, since half the store buildings in Orangerie, the main shopping center, are empty. This really saddens me.