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.

September 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. September was a true rollercoaster of a month. Let me share. I am joining in with What’s Been On Your Calendar? (#WBOYC).

The month started with me being notified by my support coordinator for my now old home that I’d be moving to my current care home on the 18th of the month. The boxes arrived the next Friday and I started packing. I had a visit at my new care home on the 15th, which my mother-in-law also attended. The new staff seemed nice, but I did feel overloaded having coffee in the living room.

My move went about as chaotically as could be. For one thing, institution transport weren’t available that day, so my old support coordinator had to move most of my stuff, the rest to be moved the next day. For another, the staff here at my new home weren’t prepared with an extra staff member when I moved, so my old home’s staff had to help me get settled.

Handover also went rather frustratingly, so I was happy when my old home staff pulled away after a day. Only then began the trouble with my day schedule. I had been informed by my old home’s behavior specialist that the intention was to keep my day schedule mostly the same as at my old care home while I adjusted. This wasn’t to be. In the first week, at least three adjustments were made to my day schedule, all cutting my hours, and several more changes were not put on paper but were implemented in practice. The most frustrating changes took place in the early afternoon, including a 60-minute group activity time slot. I tried to make it work, but was often too easily overloaded, leading to extreme irritability throughout the day.

Thankfully, yesterday my assigned staff, after talking to the manager, informed me that I would be allowed a one-on-one activity time slot during the early afternoon for now anyway, during which I can do something creative. We’ll have to see how this all works out once my one-on-one has to be renewed in November.

Today, in an attempt to celebrate my time to spend doing crafty activities, I created my first polymer clay unicorn while at this home. I would’ve been able to finish it within said activity time slot had we not also been looking at recipes for baking and put my laundry in the washing machine. Thankfully, my one-on-one staff for this activity time slot was able to come back at a later time and finish the unicorn with me.

Overall, like I said, this month was a true rollercoaster with lots of ups and a few deep downs. Things are looking up now though.

Sounds of the Intensive Support Home

Posted on by Astrid

Hi everyone. This week, one of Mama Kat’s writing prompts is to listen to the sounds in your house for five or ten minutes and let them inspire a blog post. I honestly don’t need to do this right now – I have my AirPods in my ears and their noise canceling is pretty good. Instead, since most sounds here are the same most days, I’ll write about the sounds I usually hear.

There’s this fan in my room. I have no idea what it does, but when they test the smoke alarm or when the smoke alarm goes off for another reason, it makes a deafening noise. Even when the smoke alarm doesn’t go off, the noise is a constant hum. When I came to look around here to see if I might want to live here, I thought I’d get used to it and, indeed, this is the least annoying of the daily noises, because it’s constant and monotonous.

Today, like most days, the resident who has his room next to mine was screaming and kicking his door non-stop for most of the day too. This is an intensely triggering sound, even though when the resident is this irritable he usually gets locked into his room. In fact, it triggers me, not just because I’m scared of his aggression, but also because I feel pity for him being locked into his room.

Then when I’m really lucky (not!), the resident two doors away from him has an outburst too and is being locked into her room as well. I am lucky (although truthfully I shouldn’t have to say that) that the threat of locking me up has only been used once. And I am really thankful the behavior specialist hasn’t approved locking me up or that threat might’ve been followed through on.

Then, if my window is open, or sometimes even when it’s not, I can usually hear the music the resident two doors from me on the other side listens to. He has been listening to St. Nicholas music lately, even though that celebration isn’t until December 5.

Then there are the various hallway noises. Sometimes I can hear another resident laughing or grumbling. At other times, I hear the staff fooling around. I can also hear one resident’s pet parakeet if it’s really quiet otherwise. That is a sound I cherish.

As you can tell, I mostly don’t like the sounds I hear here. Then again, I don’t like most of the things about the intensive support care home (my current care home). I hope at least some things will be better once I move to my new home this coming Monday.

Mama’s Losin’ It

My (Second) Favorite September Memory

Posted on by Astrid

Hi everyone. I want to write, but honestly don’t feel like sharing about all the stressors of the last few days in my current care home. Instead, I decided to draw inspiration from Marsha’s 10 on the 10th post again and share one of my favorite September memories. My favorite of all time is of course my wedding date in 2011, but I’ve written tons of posts about that already I believe. So I’m going to share about my other favorite memory. This is only a favorite memory in hindsight, as it was intensely stressful back then. I refer, of course, to my moving into the care facility in Raalte on September 23, 2019.

I arrived in Raalte at around 1PM, which was a bit earlier than I’d agreed on I believe, but the staff who would be showing me round had just arrived. She showed me my room and let my spouse move my furniture into it. I remember we had some discussions about things that had to be agreed upon. My spouse clearly stated that I couldn’t manage my own meds, as I’d taken two med overdoses when living in our house. The staff had been kind enough to mark the door handles of my room and the living room with tape, so that I could recognize them by touch when wall-trailing.

I also got a short tour of the day center, that is, the group I’d be attending. I remember they had a hand-made banner with “Welcome, Astrid!” on it. The guy who came here in crisis last November also got a welcome banner, but I got nothing when I got here.

In the evening, when the other clients got home from the day center, we had dinner. After that, one of the staff said she was going for a walk with one of my fellow clients. I was tempted to ask whether I could join them, but can’t remember whether I did.

I remember feeling quite a bit in shock when first coming to this care home. I asked my spouse: “You don’t think it’s all stupid, do you?” I referred to the fact that the other residents were severely intellectually disabled. Maybe I’d also noticed the poo smell. This was one of the first things my spouse asked me about when I went to have a look around my current care home. Truthfully though, I don’t care about poo smell if I get proper care.

Memories of My Paternal Grandfather

Posted on by Astrid

Hi everyone. Today is National Grandparents’ Day in the United States. I heard of this a few days ago when looking for inspiration for my blog, but didn’t feel like writing about the topic at the time. Now, the subject returns in Marsha’s 10 on the 10th post. This is a meme in which Marsha asks ten questions related to a particular topic of the month. Rather than answer all ten, I’m going with one of them, which is to share a favorite memory involving your grandparent(s).

I have shared about my paternal grandmother a lot of times already. She was certainly my favorite grandparent. Today though, I’m going to share about my paternal grandfather.

My paternal grandparents divorced in 1973, years before I was born. They didn’t have much contact since, as all of their children were adults by that time. In fact, I can’t remember a birthday or holiday when they visited my family on the same day.

My paternal grandfather was a radio technician during his working life. He knew a lot about all sorts of science and tech things. Indeed, my parents tell me I acquired my first spoken word from him. As the story goes, my father and grandfather were discussing aviation and, at one point, either of them mentioned the word “aircraft industry”. I, then ten-months-old (seven months corrected for prematurity), parroted: “Aircraft industry.” This, my parents see as a sign of my being a genius. Most of my psychologists in my adult life have seen it as one of the early signs of autism.

My paternal grandfather was probably on the spectrum himself too (as is my father, though he doesn’t care about diagnoses). We had these traditions built into his visits with us. One of them was him always giving my sister and me ƒ5 each. At one point, when my father had probably decided we were too old for this, our grandfather put the coins in a very hard to open money-box with transparant sides, so that we could see our money but not reach it. I am pretty sure I had a tantrum over it.

My grandpa had a small motorized boat. Well, large enough to sleep in. My sister once went on a week-long sleepover on the boat with him. Mid-way through it, my parents and I visited them and we sailed IJsselmeer a bit. I was both scared and excited, as we could leave the boat when it was anchored and have a swim around.

I went to grammar school, the type of high-level high school I attended, in 1999. My grandfather had attended grammar school back in the 1930s, so he gave me some kind of a button with “grammar school 1” written on it.

By that time, age 75, my grandfather started thinking he was suffering from dementia. My father brushed it off, saying he probably thinks he has dementia when he doesn’t remember the most difficult of the Latin words he learned in grammar school. As it turned out, my grandpa was right after all, as he was diagnosed with pretty advanced dementia in late 2001, age 77. At this point, he needed to be placed in a nursing home. He died not even eighteen months later. Now that I know more about dementia, I know that the stage of not recognizing people and having no short-term memory whatsoever, is by far not the first stage of dementia. I realize now too that my paternal grandmother probably suffered from mid-stage dementia too, but died of another cause before entering the phase at which point my grandfather was diagnosed. It is truly tragic that my grandfather wasn’t taken seriously.

I Am My First Priority: Intentions for Focusing on My Quality of Life

Posted on by Astrid

Hi everyone. I paged through The Goddess Journaling Workbook again yesterday and saw the first prompt: “I am my first priority”. Okay, I did write about it already back in 2020, but I think I need to revisit it and set intentions for putting myself first. I know, we are often taught, especially in more conservative circles, that we need to put others first (or after Jesus, but ourselves last, in any case). Then some more leftist folks teach us about self-love as if it’s about essential oils and vegan smoothies. Which it could be, but this is not what I mean. Rather, self-love means being true to our own values over those imposed upon us by others. And that doesn’t need to be selfish.

Now of course I need to determine my values. I’ll narrow those down to what my major point is for being in care, ie. my main goal. This is quality of life. This may be obvious to most people who aren’t involved in the care system and it should be obvious to those who are too, but for many, the presumption of competence or the need to manage daily crisis behavior clouds their vision towards quality of life. In fact, I’ve even seen one care agency state that their aim is to “maintain and where possible promote” quality of life in their clients. Well, this is wording I’d expect to go with “independence”, not “quality of life”, since truthfully, quality of life can always be promoted.

So what does quality of life mean to me? It means that I decide what I spend my limited energy on. This doesn’t mean lazing around all day doing nothing and it doesn’t mean I won’t ever improve on my ADLs at all either. What it means is that I take the lead, focusing on my daily level of energy. I told one of my staff the other day that I would prefer if she doesn’t tell me to do something independently, but rather invites me by asking me whether I want to do it independently. In that case, she’s much more likely to get me to actually do it, as I don’t feel the pressure of her expectation, because I can say “No” if I don’t have the energy at that point.

It also means that I decide what activities to do during my allocated activity time. In my current care home, I have been sometimes not even consciously adapting to staff’s preferences for activities way more than I feel comfortable with. For instance, I’ve been taken on grocery shopping trips for the staff’s personal needs under the guise of an activity more than a few times. I eventually put a halt to that, saying I would only go if I too needed something from the supermarket. Another, even more frequent, example is my playing endless card or dice games because I’m assigned a new temp worker who comes across like they’re just here to pass the time. Yesterday, I was assigned one of those and had had it with dice and card games, so I thought, screw it, we’re making a smoothie. It turned out absolutely delicious!

It also means being intentional with my unsupported times. This means rather than mindless scrolling, doing actual reading, watching or listening online. I fully intend on blogging or at least journaling more often. If I can stop caring about my stats, maybe I can post here more often based on self-help journaling prompts. I didn’t collect those books for nothing, after all.

It means being constructive in my relations to my staff. It means being honest about my needs. For example, if a staff member (usually a new temp worker) causes me emotional flashbacks with something they do or say, rather than just telling them I feel in distress, I will hopefully be able to ask for a more trusted staff to intervene for a few minutes (which isn’t the same as demanding I be supported by all trusted staff).

Finally, I will also be constructive in contributing to my crisis signaling plan once it is revised at the new care home. My plan dates back to sometime in 2021 I believe and was immediately thrown out by my former support coordinator here because “it doesn’t work at this home”. What “works” here, however, doesn’t work for me, but that doesn’t mean my plan will be fully useable at my new care home. I will try to understand the staff’s perspective when updating the plan, but will still put myself first.