Hello Monday (May 22, 2023)

Posted on by Astrid

Hi everyone. It’s been nearly a week since I touched the blog. Honestly, the week has been less than stellar, but the weekend was lovely. Let me share. I’m joining Hello Monday.

On Friday evening, I finally decided that, screw it, whether I’d get a staff whom I can trust to help me with my polymer clay or not, I wanted to clay. I put my clay box on the chair we don’t normally use, which did mean having to put several things that had been placed on top of the box on the floor. “Why is everything on the floor?” the staff asked me when entering my room. I replied that I wanted to create a polymer clay unicorn. “You do you,” the staff replied.

At first, she seemed rather uninterested and barely did the things I asked her up front to help me with. Eventually though, she did warm up to the idea of us working on a unicorn and she did give me feedback. The unicorn we created – and which I finished on Saturday morning with another staff – is the first one that has wings. It still needs to go in the oven and I intend to add glitter to the wings too.

On Saturday, I finished the unicorn, went for a walk and played a game of dice with a fellow resident here at the care home. Then, my spouse arrived to pick me up to drive to our house in Lobith. On the way there, we went into the carwash (€15 for a mediocre washing!) and got takeout Chinese food.

We had a relaxing evening at home. At around 10PM, my spouse suggested we go for a drive, as the car needed to be moved out of the street. After all, the town fair would be starting on Sunday and there’d be a procession going through our street. I forgot my passport, so we needed to stay in the Netherlands (Lobith is close by the German border). At one point, my spouse suggested we go to Burger King for ice cream, but it was closed. Next question: “Do we drive to Duiven to go to McDonald’s or go home to sleep?” I chose to go to McDonald’s. We each had a McFlurry. I had the Twix one with caramel sauce, which was lovely.

On Sunday, with the car out of the way, we could have a lie-in. I slept in until about 9:30AM.

Several weeks ago, I’d bought white jeans with my staff. I wore them for the first time on Sunday and at breakfast, they had coffee stains in them already. It looked rather gross (I’ll spare you my spouse’s description). For this reason, we decided to go clothes shopping yet again. We, like usual, went to Apeldoorn. I bought darker beige jeans.

We also stopped by Holland & Barrett, a wellness store, to look at nothing in particular. We left with six bottles of essential oils though. Initially, when looking at them, my spouse said: “Just tell me what you want, I’m not going to name them all, as they have everything.” I asked for clary sage. After looking for about ten minutes, my spouse at first concluded they didn’t have clary sage, then started naming some oils: “Clary sage, nutmeg, …” I said: “Clary sage, that’s the one I’m looking for!” I also got vanilla and jasmine oils. Don’t tell me these are usually either absolutes or oleoresins, not essential oils, I know. I am not sure about the quality of Holland & Barrett’s oils, but I don’t use them for any therapeutic benefits anyway. We also got a blend of roses and a blend of wildflowers just because one of my oils was one plus one free and the other was second at half price. Lastly, my spouse got rosemary.

We also obviously stopped by Backwerk to have lunch. I got a sausage roll.

In the evening, I started looking all over the Internet for blends to try with my new oils. Of course, I had had clary sage before, so only vanilla and jasmine were new, but I love all the possibilities. I created a blend in my diffuser this morning: equal amounts clary sage, vanilla, sandalwood and frankincense. This evening, I joked to my spouse that the blend made me high, because it’s so very calming. I love it though!

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!

Gratitude List (May 6, 2023)

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Hi everyone on this first Saturday of May. I’m joining Ten Things of Thankful (#TToT) for a gratitude post today. Here we go.

1. I am grateful for a trip to buy some new plants for in our care home garden last Saturday. One of the student staff had been planning on us having a vegetable garden here. While that’s not exactly gone to plan, we do have a few flower beds and some space for vegetables too. I loved helping pick out the first few flowers and plants.

2. I am thankful for new duvet covers. My husband last week told me he needed new ones for our bed in Lobith. Too bad twin bed duvet covers don’t come in cute colors, but those for my single bed do. I got one with rainbows on it and one with butterflies on it.

3. I am grateful for sleep. I have been able to sleep reasonably well over the past couple of days.

4. I am grateful for some success with physical therapy. The physical therapist came by on Wednesday to try to do some yoga exercises with me in order to help me loosen up my muscles. It was hard but rewarding. I am grateful my assigned staff said I can have a staff member with me during physical therapy even when it’s not during my allocated activity time.

5. I am grateful for nice weather on Thursday. We hit 20°C for the first time this year that day.

6. I am grateful for no thunderstorms that I was aware of yesterday. A lot of rain, hail and thunder had been predicted, but thankfully I was indoors when it rained and, insofar as we got any thunder at all, it was far enough away not to make me startle.

7. I am thankful for a lot of compliments on my skirt and shirt that I wore on Thursday. These aren’t really suited to the colder months (unless I find panties or leggings that will go with the skirt, but I only have black panties now). Most clients really liked my outfit. I bought both the skirt and shirt relatively recently.

8. I am grateful for ice cream. On Thursday, two staff took me and another resident to Deventer, the nearest city, to get ice cream. We originally intended to go to a place that’s supposedly really good, but couldn’t find a space to park near there, so decided to go to Talamini, an ice cream chain that’s good too. I had caramel and Kinder Bueno, a candy bar flavor, on a cone. Unfortunately, I did get the ice cream all over my skirt, shirt and into my hair.

9. I am grateful to have been supported by my assigned staff more than usual lately. She also makes it clear that it isn’t like she’d been avoiding me, but that, with all the chaos and crises among other clients and her being a regular employee here, it just isn’t always possible for her to support me regularly.

10. I am thankful I haven’t lost all hope yet. Sometimes, it feels like it, but I am glad I can still appreciate the little things in life.

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

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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.

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.

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

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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 12, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge yet again. Here are Joyce’s questions and my answers.

1. April 13th is National Scrabble Day…are you a fan? Do you enjoy word games in general? What’s an eight letter word that tells us something about your life currently?
I don’t like Scrabble, because eventually the board becomes too crowded for me to understand. I do love other word games. There was a game I used to enjoy on the iPhone called 7 Little Words. That is, until they introduced a special “screen reader mode” that was just slightly less inaccessible than the rest of the game had become from then on.

An eight-letter word that says something about my life… clueless. I’ll leave it at that.

2. Do you have a junk drawer? Is it full? Do you know what’s in it? What’s in it?
Not really. Oh wait, the upper drawer in my desk probably counts, as it does have lots of miscellaneous stuff in it, particularly parts that belong to my various gadgets, such as my original Apple Watch wristband (well, only the lengthening half of it, as I recently discovered). I do know of most things in it, but not everything.

3. When does time pass quickly for you? When does it pass slowly?
It passes quickly when I’m engrossed in writing a blog post or in a good book or especially when crafting. Slowly when I am waiting on something.

4. These eight vegetables are in season during spring-asparagus, broccoli, cabbage, carrots, celery, collard greens, garlic, herbs. What’s your favorite? Any on the list you refuse to eat? Last one on the list you ate?
Wasn’t this a question last year too? Anyway, my favorite is broccoli. There aren’t any on the list I refuse to eat altogether, but I really don’t like celery. The last one of these I ate was a carrot this afternoon with my lunch.

5. What’s the oldest thing you own? Tell us about it.
I don’t think I own anything old, so I’ll have to guess either my stuffed whale which I’ve had since I was a baby or my desk. Though I’ve owned my desk for only like 17 years, it’s secondhand.

6. Insert your own random thought here.
Thank goodness for a bit of sunshine inbetween the rain today. I went for a walk this afternoon and then stopped by the day center cafeteria to have a hot cocoa and a muesli bar, the latter of which my staff treated me to out of the vending machine. Yum!

Hello Monday (April 3, 2023)

Posted on by Astrid

Hello everyone. I’m joining Hello Monday again this evening. Let me share about my weekend.

On Saturday, my assigned staff supported me for part of the morning. We made a melt and pour soap in the shape of a heart. Sadly, I don’t have a picture and I gave it to my husband. I added gold-colored mica powder to the soap and lavender and ylang ylang essential oils.

I also created an essential oil blend for in my diffuser. I used pink grapefruit, bergamot and ylang ylang essential oils in this blend.

I did ask my assigned staff to inquire about my orthopedic shoes. This has been an issue for at least two years: I started out with supportive insoles, then an ankle foot orthosis either with or without semi-orthopedic shoes and finally now orthopedic shoes, but they still don’t fit. The shoemaker is frustrated, wondering when they’ll finally be good enough. Well, when they fit. Honestly, I am skeptical about the method they used to create an image of my feet: not using putty for a “mold” but using an iPad to create digital images, a method they’d used on a client of my care agency for the first time. My guess is this method requires some level of understanding I don’t possess but am assumed to possess based on my expressive language. Anyway, I don’t care how much of a bother I am, but I’m not accepting the reality as it is now, ie. my needing to buy new regular shoes every two months due to them being damaged from the way I walk. If they can’t fit me for orthopedic shoes, they’ve got to find a way to fix my shoe issue some other way.

Saturday was a good day overall. I was supported by two staff – my assigned staff and another – I get along with very well during the morning shift and my day schedule wasn’t disrupted. For the evening shift, three out of four staff were staff I don’t really get along with and I ended up being supported by two of them. I didn’t mind though, as my day schedule wasn’t disrupted and I did get to do some activities I enjoy.

On Sunday, my husband came by for a visit and we drove to Apeldoorn to have lunch at Backwerk once again. I had a tuna baguette. Then we went into several shops, because I wanted to buy some new spring/summer clothes. Sorry, no pictures once again. I bought a blue, flowery skirt and three simple tops in black, white and blue.

Sunday evening was a bit hard. It started out well with the staff explaining to me who would be supporting me throughout the shift. This was repeated several times. Then, at 6PM, unexpectedly a staff who wasn’t supposed to come and whom I don’t get along with, showed up. I had a meltdown and eventually, after a bit of an explanation from the other staff and trying an activity for a few minutes, I chose alone time over time with him.

I also spent my weekend working on the #AtoZChallenge, of course. I don’t generally prepare my posts in advance, so I have lots of work to do on the day itself. I also discovered Reddit last week. That is, I had an account back in like 2008, but they changed things up a lot so that’s no longer valid. I love browsing Reddit now and commenting where I can. I haven’t created a post yet.

Overall, my weekend was mostly good with some negativity due to the unexpected staff change. For those not aware, I am autistic, so it isn’t just that I don’t get along with some staff, but if they’d told me in advance, I could have been prepared.

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.