Hello Monday (May 8, 2023)

Posted on by Astrid

Hi everyone. My weekend was quite good, if a little hectic. I thought I’d share about it. I am linking up with Hello Monday.

On Saturday, I had a temp worker who was here for the first time as my one-on-one staff for most of the morning shift. Thankfully, I got along with him okay. This did mean I didn’t feel comfortable going on a walk, let alone working with clay or other crafty things. I did play a game of Yahtzee with a fellow resident in the morning. My weighted blanket was also finally put in the washing machine. I was a little worried that putting it in the dryer would damage it, but the staff told me he knew what he was doing. Thankfully, once I got back from Lobith on Sunday, I found out it was still intact.

In the afternoon, I got a new temp worker once again, but thankfully my spouse was here almost as soon as the evening shift started, so I didn’t have to deal with the temp worker long. We drove to my spouse’s and my house in Lobith, picking up groceries and Domino’s pizza along the way. I had the hot and spicy pizza with pepperoni, bell peppers, onions and jalapeños.

Because I hadn’t been walking all day on Saturday, I decided to do some dancing in the evening. Otherwise, I wouldn’t have reached my movement goal on my Apple Watch and I didn’t want to cheat by lowering it yet again (and I certainly didn’t want to break my 250-odd day streak).

On Sunday, we visited my in-laws for a bit. My mother-in-law and I went for a 40-minute walk through the village. In the evening, when I once again had a temp worker, but thankfully a somewhat familiar one, I went for two more 40-minute walks. Then, because I could, I danced some more. I finally doubled my movement goal on my Apple Watch for the first time in half a year.

Yesterday evening, I had a bit of an issue with my sister. I invited her to my birthday at the end of June, thinking that if I invited her now she would have plenty of time to make sure she actually could make it on one of the days my spouse and I are available. She got upset, because her and my youngest niece’s birthdays are first (this Saturday and on the 19th, respectively). She tried to ask me whether we would come over for her birthday too, which on the surface seems reasonable. However, being that she has both this weekend and the weekend after that planned pretty full with other family and, besides, we don’t do last-minute planning for trips that are this long (my sister and her family live over two hours away), I decided against it. According to my sister, the way it “works” in our family is everyone knows when our birthdays are and is welcome to come by, so it wasn’t like she should have invited me. Being the people pleaser that I am, I actually almost let her persuade me to allow her to ask her in-laws, whom I barely know, to pick me up when they would be visiting them on the 18th. Thankfully, my spouse intervened and told me that would be really unwise, since what if I have a meltdown either on the trip or when with my sister’s family? Finally, thankfully, it turned out she wasn’t really expecting us, but was just upset that I’d mentioned my birthday this close to hers. I can see her point.

Yesterday, as a side note, was my partner’s and my fifteenth anniversary of being a couple. I really feel pleased that we decided to “call it a relationship”back on May 7, 2008. We’ve overcome quite a few hurdles in those fifteen years, but I’m so happy that we’re stronger than ever together!

How I’ve Focused My Attention and Energy on What Is Missing As an Enneagram Type Four

Posted on by Astrid

I’ve been meaning to write more, seriously. There’s a lot on my mind, but somehow I can’t find the words to express myself. To get started, I chose a prompt from the Enneagram-based journaling prompts book I own for my type. As those who’ve read about me and the Enneagram before will know, I’m a type Four or the “romantic individualist”. The first prompt for my type in this book asks me how I’ve focused my attention and energy on what is missing.

On the surface, this seems to resonate with me, in that I’m always looking to improve my situation even when I’m relatively content. I don’t mean right now – right now I’m far from relatively content. However, back when I was in my former care home, honestly I had it pretty good and even so I was focusing on what was missing. In that case, this was, among other things, a sheltered institution environment. I badly wanted to live on institution grounds and completely lost sight of what I would lose if I took the leap to move here. And that was a lot.

In a sense, focusing on what’s missing isn’t necessarily bad. It allows a person to consider steps to improve their life. For instance, something I’ve often missed is to be a more contributing participant in my care home. Today, my assigned staff and I were discussing my birthday and I mentioned wanting to help cook the meal one of the weekend days (the staff only cook homemade meals on weekends now) around my birthday. She told me this doesn’t need to wait till my birthday and we now have a plan for me to help cook köfte for the home next week.

Often, in this sense, a wish to improve my life starts with something I’m missing. At other times, it starts the other way around, with an impulsive idea to buy something only for me to realize later on that something I feel I’m lacking in is underneath this impulsive idea. An example is my former assigned staff at my old care home having mentioned the idea of me getting a mini fridge. I got all excited, started thinking up ideas, but eventually it turned out I was missing certain supports.

As an Enneagram type Four, I am always longing for something. In this respect, the idea that I’m “always dissatisfied”, as my staff think, is sort of correct. That doesn’t mean I need to settle for something that’s absolutely unsuitable, like my current care home, though. Yes, I took the leap, but that doesn’t in itself mean I am forever stuck here. I am hoping that, if I ever find a place to live that is slightly less unsuitable than my current care home, I can stop chasing the ideal and start embracing what’s missing as an opportunity for growth in myself as much as for improvement in the situation.

Linking up with #PoCoLO and #SpreadTheKindness.

Currently (May 2023)

Posted on by Astrid

Hi everyone. I remember joining in with Currently every once in a while way back many years ago, but then the person who used to host the meme discontinued it and I never found it again. Now, I’ve rediscovered it. The Currently linky is a meme in which we share what we’re currently up to based on five monthly verb prompts. Here goes.

Loving:
First up is smoothie making. I am loving experimenting with ingredients, such as instant coffee and cocoa powder. One smoothie, in which I added just a little (or a lot!) too much instant coffee, turned out rather bad. One of my fellow residents still claimed she loved it though. We’re not officially allowed to give each other things, but since I just can’t make just one smoothie serving and she’s the one who enjoys my smoothies most, I make sure to consider her first when I have some left over.

Next are my tactile dice. I had and probably still have them at my and my husband’s house in Lobith but they’re probably down in some junk closet, so I decided to order new ones. I have been loving playing the game of yahtzee with the same fellow resident.

Picturing:
I will be going clothes shopping with my staff tomorrow and am kind of imagining how that will be going, both positively and negatively.

Craving:
I just had lunch when I started writing this post, so nothing at that moment. Now that I’m finishing up this post at 3PM, I’m craving white chocolate. I just hit my lowest weight since my wedding (in 2011) this morning and am really pleased with it though.

Wishing:
To find a more suitable care home. It’s been really hectic here at my current care home and I’m pretty sure the powers-that-be are testing my limits. For those visiting from the linky: I reside at a care home for people with mild intellectual disability and significant challenging behavior. I am supposed to get one-on-one support for most of the day, but this often doesn’t happen because others need or are supposed to need more care. I finally got the okay to be looking for another care home last March, but of course this can be a long process.

Collecting:
Smoothie recipes, of course. I downloaded several smoothie recipe collection books off Bookshare, the accessible book service for the blind or dyslexic. I don’t have all the ingredients for any one smoothie, unfortunately, but like I said, I’m trying to experiment.

The Wednesday HodgePodge (April 26, 2023)

Posted on by Astrid

Hi everyone. It’s been a few weeks since I joined in with this meme, but today’s questions for the Wednesday HodgePodge appeal to me. Here goes.

1. April 26th is National Audubon Day, honoring John James Audubon, the French-American ornithologist, naturalist, and painter known for his detailed study and illustration of birds in their natural habitats. Do you have a bird feeder? Any birds in your home decor? Have you ever owned a pet bird? What’s your favorite bird?
I am pretty sure there’s a bird feeder on my terrace, but I didn’t place it there. It was here from before I moved to my current care home and I don’t place bird food in it either.

I don’t have any birds in my home decor, though I do like birds. I’ve never owned a bird as a pet, though one of my fellow residents does currently.

My favorite bird? My first thought goes to the blackbird. I am not really sure why though, as truthfully black isn’t even my favorite color anymore (and I have no idea whether blackbirds are actually black). I do like its sound though.

2. What’s something you took to “like a duck to water”?
Blogging for sure.

3. Empty nest, nest egg, proud as a peacock, free as a bird, birds of a feather flock together, or the early bird catches the worm…choose one and tell us how it currently applies to your life.
I’ll go with “empty nest”, even though none of these expressions really apply to me. I mean, I had to Google “nest egg”, but that’s unrelated to my life too. As a childfree person, I don’t think “empty nest” applies to me either, as I never even had eggs or young in the nest, but oh well. I do feel lonely and bored with not living with my family.

4. Pumpkin seeds, sunflower seeds, flax seeds, chia seeds, sesame seeds, poppy seeds…your favorite seed and a favorite food or dish made with that seed or topped with that seed? Have you tried all the seeds on the list? Any you don’t care for?
Yes, tried all of them and love them all. My favorite are chia seeds and I use them in my overnight oats as well as in my smoothies. I also used to always buy poppy seed bread when I lived at the independence training home (basically regular bread with poppy seeds on its crust).

5. Something in the past week that made you “happy as a lark”?
Nothing really. I have been quite depressed lately, but the visits from my mother-in-law yesterday and my husband on Sunday were a welcome distraction.

6. Insert your own random thought here.
I’m off to try out the giant trampoline here at the institution in about half an hour. That hasn’t yet made me happy, but it’s definitely something I’m looking forward to. The physical therapist has to go with me to see how I do it, but he’s hoping it will help me loosen up my muscles in my back.

Unique: A Rant on the Demise of Individualized Care #AtoZChallenge

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Hi everyone. Today for my letter U post in the #AtoZChallenge, I want to rant really. I am not feeling well and really feel like, as an individual with developmental disabilities, my unique needs are missed in favor of what “everyone” or “the group” needs.

Back in like 2009, on my first WordPress blog, I already wrote a blog post criticizing care profiles for their doing away with individualized care. After all, care was now grouped into “care heaviness packages” (the old word for care profiles) based solely on one’s primary disability and one’s score on a rating scale, rather than there being different care classifications for each different sort of care (eg. support, personal care, housekeeping, etc.).

This is not what I want to talk about in this post though. Rather, I want to talk about the individual’s care needs being shoved under the carpet because they do not align with what that particular home is used to providing in general. And, in the case of my current home, it isn’t like there aren’t exceptions.

I cannot go into detail without breaching confidentiality – although really the staff shouldn’t have told me confidential information about other clients, truthfully. However, my home consists of “the group”, which are six clients or six clients plus me, and then there’s either me or I’m part of “the group” depending on whom you ask and when, and then there’s a client who gets full-time one-on-one. The one-on-one client is exempt from almost everything “everyone” needs to deal with, such as temp workers, regular switches in staff, of course alone time, etc. I don’t know all the reasons behind this and even if I did, I wouldn’t be allowed to disclose them here, but I frequently find myself being jealous of this client because her needs seem to take precedence over everyone else’s.

Then when competing for having our needs met, it’s me against “the group”. The home employs an extra full-time staff member to do my one-on-one even though I don’t qualify for full-time one-on-one, so I figured this should be a no-brainer: we all get our needs met, since I’d get my one-on-one and then there’s still even some hours when there’s an extra staff for “the group”. “The group” should be in luck! Well, no such thing: I am in luck if I get my one-on-one according to my day schedule and even then staff complain that I ask for too much if I ever so much as dare leave my room once during my time without support.

As for the temp workers, well, my needs get met last, because “the group” needs at least one regular staff and even if there are three regular staff members on shift, usually the fourth will be sent to support me so that the second won’t have to explain too much to number three.

In another situation, too, my individual needs get shoved under the carpet in favor of what “everyone” needs, ie. when I’m treated harshly for having a meltdown. I often hear staff say that they’d treat my fellow clients the exact same they treat me. Well, it may be so, but I’m not my fellow clients. I am me and I have my own unique needs.

How I Like to Spend My Weekends

Posted on by Astrid

Hi everyone. Today I’m participating in Sadje’s Sunday Poser. She asks us whether, on weekends, we like to relax at home or prefer to go out. Since I prefer a combination of both, let me share how I usually like to spend my weekends.

On Saturday, most weekends, I stay at the institution (I still can’t really bring myself to call it staying “at home”). My day schedule isn’t any different then from other days, except that we get a treat with our coffee and soda and chips in the evening. I don’t tend to lie in on Saturdays either, because I feel it’d disrupt my circadian rhythm. Which, to be honest, is quite disrupted as it is from the naps I do take. This is not just a Saturday thing though.

Like I’ve probably mentioned before, my day schedule consists of activity slots intertwined with times when I don’t have support. During my activity slots, I usually go for walks, play card games or occasionally do some crafts. During my times without support, I prefer to chill out on my bed with some music on (which usually leads to me falling asleep) or to read.

Sundays are the exciting part of my week, as my husband then visits me. He generally arrives here at around 1PM. Most weekends, we drive to Apeldoorn to go to Backwerk, where we eat a sandwich or baguette. We also usually take a stroll through the city and go to Hema, a department store which is my husband’s favorite. Sometimes, we’ll go to other stores too. I usually arrive back at the institution at around 3:15PM.

Every once in a while, I’ll go to Lobith to spend the weekend. Usually in that case, my husband picks me up on Saturday at around 3PM and I am back at the institution on Sunday around noon. Even though I usually take my laptop with me, lately I haven’t really used it at all, as we were so comfortable relaxing on the couch together that I didn’t feel a need to retreat upstairs.

As for what I prefer, I really wish there were some difference in my day schedule between weekdays and weekends, but this somehow isn’t possible. Other than that, I like the combination of relaxing in my room and going out with my husband.

Restraints and Other Restrictive Measures in the Dutch Care System #AtoZChallenge

Posted on by Astrid

Hi everyone. Today, it’s time for my letter R post in the #AtoZChallenge. I didn’t know what to write about for this post, so I looked at some books for inspiration. Then, the topic of restraints came up. This is quite a controversial one and sadly restraint and other restrictive measures are still commonly used here in the Netherlands. At least here at my current care home.

In the Netherlands, in 2020, the Care and Force Act replaced the law on exceptional admissions to psychiatric hospitals that previously regulated restrictive measures. Under the old law, only those involuntarily committed to care facilities or psychiatric hospitals could be subjected to restrictive measures against their will. This was not to say people weren’t pressured into consenting to restrictive measures. For instance, when I had been at the locked psych unit for a few months in early 2008, I was significantly dysregulated. My doctor told me she was implementing seclusion and, “if it doesn’t work, we’re going to file for involuntary commitment”. She should have said “if you don’t consent”, but I had no idea I even had a right to consent.

Under the Care and Force Act, anyone receiving care can be subjected to restrictive measures, which are euphemistically and rather incorrectly called “involuntary care”. Yes, even people receiving care in their own homes. And like I said “involuntary care” usually isn’t care at all, but are measures to restrict someone’s freedom, often in the absence of appropriate care. For instance, if a person with dementia lives independently, they can be involuntarily prevented from entering their own kitchen if they’re a risk of leaving appliances on.

I don’t know the exact criteria for people to be subjected to restrictive measures. It has to do something with risk of significant detriment to the client or others. I was, at my old home, subjected to some restrictive measures. For instance, several doors were locked at night because I would enter those areas (eg. the kitchen) and be a danger to myself there. Here at my current home, the door to the living room and all entrances are locked at night anyway and have been from before I came here. I do know at least one fellow resident is locked up in her room at night. This, to me, feels a bit unfair, particularly because there’s no night staff directly available and the ones in the main building usually just tell us to go back to sleep when we press the call button.

Restraint specifically – restricting someone’s physical movement – is also commonly used here. I, thankfully, have only been physically dragged by several people a few times and was never shoved to the ground or forcibly held in position.

The author of the book I read, which is a parent’s guide to autism, recommends not reacting to a disabled person’s meltdown at all unless in such a way absolutely necessary to keep them and others safe. I am not sure I agree, since honestly I don’t feel that many people with developmental disabilities do have the self-regulation skills necessary to calm themselves. In my experience, “crying it out” will not teach them those skills, but will teach them that you’re not available. In the same way, I honestly don’t feel that someone will actually have a meltdown just so they can be restrained, as the author claims. I, honestly, have never felt that having my movement restricted was comforting.

People First?: Issues Surrounding the Language of Disability #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter P post in the #AtoZChallenge. I wasn’t really sure what to write for today’s letter and was still feeling a bit unmotivated, until I decided on a topic and now I’m excited to share. Today, I am going to talk about the language surrounding disabilities, particularly of course intellectual and developmental disabilities. I kind of provocatively titled my post “People First?”, because that, without the question mark, is often used as an argument for so-called destigmatizing language.

Which language, to be honest, isn’t destigmatizing at all. I mean, of course it is good that the term “mental retardation” got removed from the DSM (in 2013!). However, when you refer to someone as an “IB’er” (shorthand for “intensive support user” in Dutch), with “intensive support user” being code for a person with significant challenging behavior, it isn’t destigmatizing at all. And no, in my opinion, changing things around to person-first language (“person with intensive support needs”), doesn’t necessarily remove the stigma unless it is accompanied by an added awareness that someone is more than their support needs. As a side note, the only time I’ve heard the term “IB’er” used in reference to me, was by my staff saying I am not one, by which they mean I don’t need the harsh approach my fellow clients apparently need. I mean, it can’t really mean I don’t have challenging behavior, right?

With respect to people with intellectual disabilities in general, person-first language is commonly preferred by professionals. Whether this is less stigmatizing, I doubt. To be honest though, the abbreviations used in job descriptions and care profiles, usually don’t employ person-first language at all. For example, a treatment facility for people with mild intellectual disability and significant challenging behavior is referred to as a “severely behaviorally disturbed, mildly intellectually disabled” (“SGLVG” in Dutch) facility.

Whether people with intellectual disabilities / intellectually disabled people themselves prefer person-first or identity-first language, I do not know. Most autistic people prefer identity-first language, reasoning autism is an integral part of who they are. I, personally, don’t really have a preference. What matters to me is not the language you use to describe me, but the way you treat me. In this respect, whether you refer to my current care home’s population as having intensive support needs or displaying challenging behavior or as behaviorally disturbed, I do not care. The euphemistic approach here (“intensive support needs”), after all, does not do anything to change the staff’s attitudes towards us.

The Wednesday HodgePodge (April 5, 2023)

Posted on by Astrid

Hi everyone. It’s time for the Wednesday HodgePodge once again and I’m giving it a try. Last week, I was scared away by the challenge of writing a limerick. I hope my participating in the hodgepodge today doesn’t mean I won’t have energy left for my #AtoZChallenge post later this evening. We’ll just see.

1. What would you say is the most difficult task when it comes to spring cleaning? Have you completed that task this year? Any plans to get it done?
Uhm, I don’t do spring cleaning or most cleaning at all for that matter, but when I still did my own cleaning back in the independence training home in 2006-2007, I thought windows were the hardest. I tried them exactly once in the 18 months I lived there and the staff agreed it’d be best to hire someone to do those for me. Another task I hated was cleaning out kitchen cupboards. I don’t have those here, but I seriously need to give the cupboards and closets I do have a good wipe down.

2. Your favorite pastel color? Favorite thing you own in a pastel shade?
My favorite pastel color is probably lilac, although I love all pastel colors really. I don’t own any pastels in my clothing as far as I’m aware, but I do own several pastel shades of polymer clay. The one I use most often is pastel aqua Fimo.

3. Do you like ham? Do you fix ham year round or is it mostly just a “holiday food”? Baked ham-ham and eggs-ham and cheese sandwich-scalloped potatoes and ham-Hawaiian pizza….what’s your pleasure?
I don’t really like ham, but it isn’t like I dislike it either. It’s not specifically a holiday food here. My favorite food that includes ham would be a Hawaiian pizza.

4. Do you celebrate Easter? What did Easter look like when you were a kid? What are your plans for Easter this year?
I don’t celebrate Easter. I mean, we might have some treats here at the care home and I’ve heard the living room was decorated for it, but it’s not like I go to church. Never been, in fact. I grew up atheist, so while we’d paint eggs and go on an Easter egg hunt, the story of Jesus’ resurrection wasn’t really familiar to me.

5. Something that makes you feel hopeful amidst all the chaos and confusion this world brings?
I am not sure how to answer this question, as I realize most hodgepodge’ers are Christians and I am not. I am not even sure what I do believe in. I mean, I am certainly not an atheist, but I have let go of my belief in the God of the Bible. Now is not the time for me to go into my reasons why, as I don’t want to offend my Christian fellow hodgepodge’ers.

However, to answer the question, I do believe that, ultimately, things will work out. I sometimes cynically joke that things will work out in 2034, referring in a kind of twisted way to the book by that title that claims World War III will start then. Seriously though, I do believe in some higher power, which I’m not sure yet what to call, by which everything is connected and will ultimately fall into place as it should be.

Other than that, the small joys I experience each day remind me that there’s still hope in the world.

6. Insert your own random thought here.
I’ve been in my current care home for exactly six months today and am hopeful it won’t be much longer, as there have been a lot of crises lately. Today, however, so far, is a pretty good day. Let me focus on that!

March 2023 Reflections #WBOYC

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Hi everyone. It’s the last day of the month and this means I’m reflecting back on this month’s happenings. I’m joining What’s Been On Your Calendar? (#WBOYC). Here goes.

This month would have started with my having the meeting on my care on March 2, but it got postponed yet again for the third time. I did get a visit from my mother-in-law instead and we took a walk through a nice park. Here are a couple of pictures my mother-in-law took with her phone of a remembrance stone we saw there.



The next Sunday, my husband and I drove to Ikea in Zwolle, where I bought a stuffed orang-utan. I so far didn’t show it on the blog yet, so what better day to do this than today?

On the other Sundays, my husband and I drove to Apeldoorn to have lunch at Backwerk. We did try visiting another lunch cafe once at the recommendation of one of my staff, but literally all tables were dirty.

On March 17, I finally had the meeting on my care. The positive aspect was that the powers-that-be will be looking for another, hopefully more suitable care home for me. The negative aspect is the fact that, in the meantime, nothing will change. This had me spiral out of control quite a bit, which my staff feel frustrated with.

Last week, it led to a bit of a disagreement between me and my assigned staff, because she got frustrated with my negativity. The way she worded it, even if my day schedule doesn’t get disrupted and I’m supported by regular staff for the entire shift, I still find a reason to complain. I countered that this hadn’t happened in months. Even this morning, with three out of four staff being regular employees, the fourth staff supported me for most of the shift.

In the health department, I did pretty well. I finally saw the dietitian last week and we concluded I no longer need to lose weight. Not that weight loss ever was a priority for me, more like a welcome side effect of my healthier-for-me lifestyle. The fact that I’d lost weight rather rapidly over the past five months, meant I had to up my calorie intake to prevent further weight loss. I did gain a bit of weight in the first week on my new food plan, but then again I did eat fries once in that week and a large burger another day. I’m not stressing about the weight gain at all.

In other health news, my cardio fitness level according to my Apple Watch has declined slightly and is in the “low” range again, though just barely. My heart rate recovery, on the other hand, is steadily improving.

All this being said, I’m trying to embrace my body as it is and appreciate my health for what it is.

In the blogging department, I did quite poorly, having written only eleven posts including this one. I am not sure how I’m going to do with the April A to Z Challenge given this reality, but I trust I can do it.